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Neurodigest
Update on Neurology
for Primary and Community Care
ISSUE 2: 2015
ADVANCES IN CLINICAL NEUROSCIENCE & REHABILITATION
Reviews
Case Studies
Commissioning
Rehabilitation
In partnership with the Primary Care Neurology Society
CONTENTS
CONTENTS
ISSUE 1: 2014
Welcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
• Neurodigest Editor, Dr Alistair Church, offers his thoughts on our 2nd issue.
Neurology Network . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
• Dr Paul Morrish, Consultant Neurologist, outlines the importance of
The Neurology Intelligence Network
Service Development . . . . . . . . . . . . . . . . . . . . . . . . . . 7
• Primary Care management of headache – a pilot pathway and guidelines
Commissioning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
• Sue Thomas outlines the importance of expert commissioning support
in neurology
Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
• How a network approach has helped in a new model for care provision for
people with Motor Neurone Disease
Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
• Prof Pam Enderby explores the importance of clarifying patients’ needs and
levels of community rehabilitation services required
Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
• Parkinson’s Disease – does DNA Methylation hold the key?
Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
• Targeted botulinum toxin and restoration of hand function following a severe
brain injury
Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
• Rapid and reliable management of early-morning OFF periods in patients
with Parkinson’s disease
Service Development . . . . . . . . . . . . . . . . . . . . . . . . . 20
• Focusing on the ‘invisible patients’
Neurology Networks . . . . . . . . . . . . . . . . . . . . . . . . . . 21
• A round-up of news from the Strategic Clinical Networks across the country
If you have any comments or questions about
Neurodigest, please email the Publisher, Rachael
Hansford at [email protected].
A full PDF of this issue of Neurodigest is available to
download from ACNR’s website at www.acnr.co.uk
Neurodigest
Published by Whitehouse Publishing,
in partnership with
The Primary Care Neurology Society
PUBLISHER
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NEURODIGEST • ISSUE 2 • 2015 • 3
FROM THE EDITOR
Welcome
A very big welcome to our second edition of Neurodigest: a communitycentric neurology focused journal. Our mission is to seek out excellent care
wherever we find it and disseminate this to our expanding readership. This
has never been more important. Another 5 years of Conservative government
is likely to see acceleration of commissioning, giving stakeholders a unique
opportunity to influence and shape their future local service.
CCG’s (clinical commissioning groups) need to be mindful of their
patients’ needs before designing a service. Pam Enderby shares her
“8 levels of care tool”. This specifically helps to indentify patient’s
requirements; an important step in ensuring services are “fit for
purpose.”
Headache is of course the number 1 reason for referral to secondary
care and is thus a low lying fruit ripe for picking. Keith Redhead has
kindly shared with us the West Norfolk Pilot Pathway for managing
headache in the community - a path I am sure many CCG’s will be
looking to go down.
We are indebted to Paul Morrish and Alex Massey for highlighting
the level of pre-existing Neurology provision across England.
It is no surprise to see the word “inequality” coming up time and
again. Hopefully the next few years will see his map turning a more
homogeneous colour and these “invisible” patients becoming more
opaque.
The old days of patients with chronic neurological disease, taking their
place every 6 months in the local DGH to see their Consultant are
hopefully numbered. Ruth Glew and Ken Dawson outline how they
have set up a patient centred, multidisciplinary, integrated network
for patients with Motor Neuron Disease in SE Wales.
Neurodigest is also very grateful to Nigel Williams for providing an
“easy to digest” view on the topic of Epigenetics. Greater understanding
of how to answer the “Why me?” question patients often pose is
knowledge we can all benefit from.
Patient stories are always illuminating particularly to those of us who
refer our patients to support services such as Neurorehabilitation.
Julian Harriss demonstrates how a specialist multidisciplinary
approach applied to a patient with traumatic brain injury can lead to
dramatic, life enhancing improvement.
Management of Parkinson’s disease can become a difficult balance as
motor complications arise. Ray Chaudhuri guides us
through the treatment options available to help
patients though the first hour or two of the day.
Finally we report back from several Neuroscience
Strategic Clinical Networks who have been kind
enough to update us on their progress in
reshaping the delivery of local care across
the country.
We very much hope you enjoy this
second issue of Neurodigest.
Should you wish to offer your
thoughts/comments on any
of the subjects being aired, or
you would like to contribute to
a future issue, please get in touch
with the Publisher via Rachael@
acnr.co.uk
4 • NEURODIGEST • ISSUE 2 • 2015
Alistair Church,
Neurodigest Editor
CASE MANAGEMENT
Hemiplegia
Parents may initially notice their infant
having difficulties such as reaching out
and/or manipulating toys with the affected hand. He should be
referred to the local paediatric and physical therapy service to:
• Confirm the diagnosis that the movement
difficulties are due to hemiplegia
• Investigate for a possible underlying cause
• Provide a management plan with medical
follow up and physical therapy
In our online article by Dr Anne Kelly, Consultant Paediatrician,
NHS Leeds Community Healthcare, you can find out more about
diagnosis, neuro-imaging, phsyio and OT assessments, and general
principles of management. The article also looks at areas of
progress and age related expectations.
Read more at www.neurodigest.co.uk
Hemihelp
HemiHelp is a charity that was set up by a small group of parents
in 1990. It has grown into a national organisation that has a
membership of over 4,000 families and professionals from all over
the UK and beyond. They provide information, support and run
events for children with hemiplegia and their families as well as
for professionals (medical and educational) involved in their care.
Their work benefits professionals in the NHS, social services and
schools who work with children with hemiplegia and is the first
service recommended to families at the point of diagnosis.
For more information about hemiplegia or Hemihelp, see
www.hemihelp.org.uk or call 0845 1203713.
Neurology Networks
What is the NIN (Neurology
Intelligence Network)?
Paul Morrish
Member and adviser to Neurology Intelligence Network
Paul Morrish qualified in 1983 and trained in General Practice at Milton Keynes. He went back into hospital
medicine and then neurology. He worked in research in Parkinson’s disease, and was Neurology Consultant in
Sussex and in Gloucestershire where he pursued an interest in neurology service development and education.
He now works part-time as a Neurologist in Bristol and helps the Neurology Intelligence Network with data
analysis and interpretation.
E: [email protected]
We live in an age of information, but information
and knowledge are not synonymous. In the NHS
in England, information is continually collected and
the performance of the NHS judged by it. General
practitioners know all too well how information
collection in their job has moved from an occasional
trawl through Lloyd-George notes in the interest of
research and audit, through computerised record
keeping and data collection, to payment according to
the provision of data for national collecting houses,
and then perhaps removal of payment. One national
collector of data, the HSCIC, now has masses of data
concerning neurology services but it doesn’t have
local knowledge.
The Neurology Intelligence Network, part of Public
Health England, will provide a publicly available source
of data and an interpretation in order to improve
the health and the services provided for those with
neurological symptoms and illnesses. For intelligent
commissioning there needs to be a combination of
local knowledge and local and national information.
That way commissioners can compare their own
performance with similar geographies in the difficult
task of caring for people with these disabling and often
fatal illnesses. To give a taste of the content of this
massive information store, this article presents just
one of many hundreds of pieces of information and
gives a glimpse into the difficulties in interpretation.
So here is a patchwork of shading, with the
numbers behind that revealing a scarcely believable
range in service provision. Some CCG areas, the
lightest shade, received between 2 and 6 neurology
appointments per 1000 residents, whilst others, the
darkest shade, received between 13 and 20, a range
beginning as low as 1.7 and ending as high as 19.8
per 1000 residents. Being unhealthily cynical, my next
thought is to ponder data quality. Where do these
figures come from? The numbers provided for the
map excludes DNA’s and cancelled appointments.
They are collected by PHE from all the CCGs in
England, and the assumption is made that all the CCGs
are doing it in the same way, even though it’s quite
possible that they aren’t. Exposing and comparing
the figures might encourage CCGs to communicate
A map of new patient appointments in neurology:
This map shows (in quintiles) the number of attended appointments for new
patients in neurology in England in 2012-3, for each thousand resident adult
population. When such information is shown to GPs and to Neurologists there
are numerous interpretations, sometimes informed by local knowledge, and
occasionally accompanied by outrage, bias and self-interest. So please do look at
the map and jot down your own interpretation of the picture, perhaps considering
national and local issues, before reading further on to mine.
NEURODIGEST • ISSUE 2 • 2015 • 5
Neurology Networks
with each other and compare what they do or don’t include in
their data collection; in doing so the quality and comparability
should improve. If concern over data quality compels us to
exclude the quintiles (or 40 CCG’s) at either end, there is still
a range from 6 to 13 per 1000 adult population. There is very
definitely not equitable access to a neurology outpatient opinion
in the NHS.
The map shows one year only so why take any notice? A new
consultant appointment, an old consultant absence, a waiting list
initiative, a newly introduced deterrent to referral or a newly
offered open access to CT or MRI scans will all produce a swing
in appointments attended. Local knowledge might help explain
where one’s own CCG fits in the picture, but it could take every
one of these factors working collectively to move a CCG from
one end of the range to the other. The pattern of inequality
shown here was also apparent in 2008 and hasn’t changed
a great deal despite a doubling in the provision of neurology
appointments.
medical admissions unit, some teaching, a little research, some
agitating for better local neurology services and maybe, for the
purposes of an upcoming appraisal, some compulsory reflection.
It is probable that appointments for patients with neurological
symptoms are provided in many areas by other specialties, or
that in some areas patients are referred where in other areas
those symptoms are perfectly managed by the GP without
referral. There is no evidence either to compare the costs and
efficacy of different specialties in managing different neurological
symptoms. So the figures need to encourage the development
of evidence to guide service development. The second question
is to ask what would be the “right” number of new neurology
appointments to be provided by a CCG. That number would be
the number of patients within each area that develop neurological
symptoms, that take those symptoms to the GP, that are assessed
and referred according to their belief in the power of a specialist
and that GP’s confidence, and then that the GP makes the choice
to refer to neurology. So the right number will depend upon
the demographics of the CCG, the gatekeeping of the GP and
the perceived neurological competence of the local neurologists
and the alternative specialists. Referral guidance and triage,
good local interaction between primary and secondary care,
GPwSI’s working closely with secondary care and communitybased neurology nurses could all improve things, and hopefully
can also start to provide the evidence to prove their worth
to the local community. This, of course is where we came in;
the acknowledgement that national information is important
and interesting but may only be relevant in the context of local
knowledge.
If we accept the data collection as imperfect, and as a snapshot
of service two years ago, can we see anything important? The
inequality of provision is likely to be multifactorial with area
demographics (for example age, sex, socio-economic and racial
characteristics) determining the neurological need of an area, but
need is clearly not the only factor that underlies neurological
demand and provision. North London, perhaps through its
proximity to large traditional neurological centres, is relatively
well off for appointments. Nearby Tower Hamlets and Newham
however appear to benefit less from that proximity. London, in
general, seems to be a lot better than elsewhere, and Cumbria
REFERENCES
and Doncaster do much worse.
For me, there are two nagging and related questions that are
prompted by the numbers. The first is whether the inequality
in provision produces inequality in neurology patients’ care and
health. A CCG commissioner might reasonably respond to
their area’s relative lack of appointments by asking to see the
evidence for the value of more appointments. That evidence
is, despite all the data being collected, simply not available at
present. Outcomes are difficult to define and measure in all
chronic disease, not just neurology. Is it fair to expect patients
to wait for the evidence before we provide a service? We don’t
ask for an RCT of a parachute.
Sometimes things need to be done
because it looks like they need to be
done. The patients’ organisation, the
Neurological Alliance, has published a
report3 of its survey on neurological
services (see article on page 20).
“The Invisible Patients” report tells
us that 40% of respondents waited
more than a year and that 31% saw
their GP 5 times or more about
their symptoms before seeing a
neurology specialist.3 It is of course
important to question the worth of a
Neurologist, and my response would
be to delicately suggest a read of
“What is the value of a neurologist”4
a commentary from a colleague’s day
that included diagnosing the unusual,
breaking bad news,counselling a family
with genetic disease, and supporting
the chronically sick; it might also have
included a ward round, a visit to the
6 • NEURODIGEST • ISSUE 2 • 2015
1.
2.
3.
The Compendium of Neurological Data, England 2012-3 http://www.
hscic.gov.uk/catalogue/PUB13776 (accessed Oct 2014). Copyright ©
2013, Re-used with the permission of the Health and Social Care
Information Centre. All rights Reserved.
The Neurology Fingertips Tool http://fingertips.phe.org.uk/profilegroup/mental-health/profile/neurology (accessed Oct 2014).
Neurology profiles produced by the Neurology Intelligence Network,
cosponsored by Public Health England and NHS England. Crown
copyright 2014.
The Neurological Alliance, The Invisible Patients; Revealing the state
of neurology services. Jan 2015.
Service Development
Primary Care management of Headache:
A pilot pathway and guidelines including access to MRI
Keith Redhead
Keith Redhead is a GP Trainer in Kings
Lynn, Norfolk. Previously a GP Specialist in
Neurology, he became Neurology Lead for
the West Norfolk Clinical Commissioning
Group.
E: [email protected]
Debbie Craven
Debbie Craven has worked in West Norfolk
as a Primary Care Pharmacist/Prescribing
Advisor for 14 years and always valued the
opportunity to work with fellow health
care professionals to ensure patients
receive optimised care.
Dan Rose
Dan Rose undertook his Radiology training
in Nottingham and is now a Consultant
Radiologist and Divisional Clinical Director
at the Queen Elizabeth Hospital, King’s
Lynn.
Andrew Dowson
Andrew Dowson worked as a GP for
several years before becoming a specialist
in headache. In 1996 he founded the NHS
King’s Headache Service at King’s College
Hospital, London. He is the Clinical Lead
for the East Kent Headache Service and
lecturer at Edinburgh University.
Philip Buttery
Philip Buttery is Lead Neurologist for
Deep Brain Stimulation (DBS) services in
Addenbrooke’s Hospital, working alongside
the neurosurgical team. He trained at
Oxford University and completed his
specialist training in East Anglia.
Jonathan Graham
Jonathan Graham is Consultant
Radiologist with the Midcentral District
Health Board in Palmerston North, New
Zealand, having trained at Charing Cross
and Westminster Medical School and
on the Guys and St Thomas Radiology
Rotation in the UK.
Jeremy Brown
Jeremy Brown trained in London
and Nottingham and is a Consultant
Neurologist at Queen Elizabeth Hospital
King’s Lynn and Addenbrooke’s Hospital
Cambridge.
Geoff Hunnam
Geoff Hunnam is a Consultant Radiologist
at The Queen Elizabeth hospital Kings
Lynn since 1987 where he has been
Medical Director from 2006-2012 and
Clinical Director of Radiology 1990-1996,
2004-2006.
Summary
A pilot pathway and guidelines to assist primary care
practitioners managing patients with headache was introduced
by the West Norfolk Clinical Commissioning Group (WNCCG)
after GPs had expressed a wish to have greater access to
imaging. The pathway, which included GP access to MRI (GPMRI), provided guidelines as to who should not be referred
for scanning, but rather admitted or referred urgently i.e.
“Red Flags”. It grouped the “Green flag” patients with primary
headache into categories, to aid diagnosis, provide evidence
based treatment plans and guidance as to which patients
were eligible for GP-MRI. The pilot was preceded by a well
evaluated educational programme provided by the authors of
the pathway.
12 months following access to GP-MRI there was a 29%
reduction in headache referrals to the neurology department.
Background
Headache is the most common new neurological symptom
presented to General Practitioners and to Neurologists.
However only 3% of headache consultations are referred to
secondary care. Headache is the reason for up to a third of
new neurology referrals from General Practice. In 2011-12 it
was the reason for 24% of referrals from West Norfolk GPs to
the department of Neurology, Queen Elizabeth Hospital, Kings
Lynn.
Headaches presenting to GPs are most commonly migraine
and chronic tension headache and it has been suggested that
most primary headache can be managed in General Practice.
However, primary care health professionals find the diagnosis
and classification of headache difficult, and both health care
professionals and patients worry about serious causes such as
brain tumours2 despite the fact that when patients present to
their GP with headache the risk of brain tumour is 0.09%2.
The decision to investigate headache depends on a number
of factors including therapeutic value, clinical confidence, time
constraints in the consultation, availability of imaging, the GP’s
approach to risk and uncertainty, reassurance of an anxious
patient and medico-legal concerns.
Primary care access to imaging has been shown to reduce
referral rates in chronic headache 3,4,5. The findings of a study in
Nottingham suggest that a defined access pathway for imaging
to investigate chronic headache preceded by a GP educational
meeting and clear MRI reporting for non-specialist referrers
can be deployed appropriately in a primary-care setting6. At
a clinical commissioning engagement meeting (held on 9/2/12)
West Norfolk GPs expressed the desire to have access to
imaging to investigate headaches.
Initial concerns about GP access to MRI
Preliminary discussions with the local Neurologists in Kings
Lynn revealed their concerns that providing GPs access to
MRI may lead to delay of acute diagnoses such as subarachnoid
haemorrhage, arterial dissection, meningitis and giant cell
arteritis. These patients needed to be admitted or referred
urgently and not referred for scanning. An additional concern
NEURODIGEST • ISSUE 2 • 2015 • 7
Service Development
was the risk of doing harm to the patient by discovering
“incidental findings” on the MRI and thereby causing anxiety.
Incidental findings on brain imaging may be found in 0.6-2.8%
of the population. The radiology department was concerned
about the potential for a large number of MRI requests. The
(WNCCG) commissioners were concerned about duplication,
overspend of resources and the importance of prescribing
within the local guidelines.
a 29% reduction compared with the 335 referrals in 2011/12.
There was a reduction of headache as the reason for referral
to neurology as a proportion of total neurology referrals from
24% to 21% to 18% over the same period.
12 months after access to imaging there had been 36 referrals
for GP-MRI. 2 patients failed to attend (patients offered 2
appointments). The condition of 1 patient altered after the GPMRI had been requested and that patient underwent urgent
CT scan after discussion with the radiology department. Of 33
Creation of a working group to create the pathway
A working group consisting of General Practitioners, patients who underwent GP-MRI, there was only 1 abnormal
Radiologists and Neurologists met to devise a headache pathway result, a possible normal pressure hydrocephalus. There were
and guidelines including access to MRI. The pathway provides 32 normal results, which included 9 incidental findings (27%).
guidelines as to which patients need admission or urgent
The 9 incidental findings were:
referral and those with chronic headache who may benefit from
MRI referral. Normal investigation does not eliminate the need • 1 cerebral atrophy
for follow up and appropriate management. It is estimated that • 5 small vessel ischaemia
60% of patients presenting to General Practice with headache • 2 pineal cysts
have migraine. Accordingly it was agreed that the pilot pathway • 1 type I Arnold Chiari malformation.
should also contain guidelines regarding the management of
Three of 33 patients who underwent GP-MRI were referred
headaches. Advice was provided by the Director of Headache
on to the neurology department. One patient with possible
Services at Kings College Hospital London.
normal pressure hydrocephalus was referred directly as a result
The Community Pharmacist collaborated with the WNCCG of GP-MRI. The other 2 patients were referred for further
medicines management team, to ensure the pathway treatment advice on the management of their persistent headaches. They
plans were in keeping with locally agreed prescribing had incidental findings on their GP-MRI (cerebral atrophy and
pineal cyst).
guidelines.
Subsequently a business plan was drawn up with the
Commissioning Manager and agreements were made regarding
neurology tariffs and the costs for GP-MRI. A GP-MRI electronic
request form was designed including contraindications to MRI
for referrers. GP-MRI reporting was to be undertaken by
General Radiologists in a suitable GP-friendly fashion. Thus,
when incidental findings were detected, explicit guidance
would explain their relevance. Monitoring of both GP-MRI and
neurology referrals was undertaken by the operations manager
of the WNRMC.
Launching the pathway
All 23 practices in the West Norfolk Clinical Commissioning
Group (WNCCG) (population 164,500) were to be provided
with access to MRI for refractory headache. This access was
linked to an educational programme to launch the pilot pathway.
The Neurologists and Radiologists insisted that a representative
from every practice attend the educational meeting, to ensure
that patients were referred according to agreed criteria. A
meeting was held on the 4/7/12 organised by the GP tutor.
Every GP was invited and all practices were sent the proposed
pathway. The evening 2 hour 15 minute meeting consisted of
5 presentations followed by questions and answers. A second
afternoon meeting with a similar format was held on 21/3/13,
to ensure that remaining practices were represented. The pilot
was launched on the 1/4/13.
Results
The headache pathway and guidelines were launched on 4/7/12
at an educational meeting, and by electronic distribution of
the pathway to all WNCCG GPs. It was originally planned that
access to GP-MRI would commence at the same time. However
due to contractual problems access to GP-MRI was delayed by
eight months, finally launching on 1/4/13.
The results of 22/23 practices (population 163,821) who used the
Choose and Book system.
GP-MRI for headache – A pilot pathway & guidelines*
Download the full pilot pathway from www.neurodigest.co.uk
Patient 12 years or older
presents with Headache
Ask the patient to use
a headache diary for a
minimum of 8 weeks to
record:
• Frequency duration
and severity of
headaches
Exclude serious cause with
history examination and
baseline investigations
(See red box in
online version at
www.neurodigest.co.uk)
• Associated
symptoms
• All prescribed and
OTC medications
• Possible precipitants
• Relationship of
headaches to
menstruation
Use headache diary to help diagnose primary headache.
Record for 8 weeks.
Try conventional treatments according with
guidelines for example in green boxes (See green box in
online version at www.neurodigest.co.uk).
While treatment is ongoing it is important that patients
continue to be monitored for emergence of clues
for more serious headache (See red box in online version
at www.neurodigest.co.uk).
If treatment failure after several weeks then it is
reasonable to consider referral for GP-MRI.
It is acknowledged that in some cases
scanning may aid treatment through
reassurance for patients and referrer.
There was a reduction of headache referrals from 335 in
2011/12 to 299 in 2012/13, and 237 2013/14. This represents *This is an evidenced based guideline rather than a rigid protocol
8 • NEURODIGEST • ISSUE 2 • 2015
Commissioning
Discussion
The overwhelming support for this project from constituent
GPs was demonstrated by their attendance at educational
meetings, their evaluation of the pathway, and their willingness
to participate in the pilot.
The reduction in referrals in the first year would seem to be
attributable to the educational meeting and distribution of the
pathway. The reduction in the second year would appear to be
a combination of the pathway and access to imaging. Overall
there was a 30% reduction in headache referrals to neurology,
while referrals for other neurological complaints over the same
period remained static.
The concerns about increased cost and increased demand for
MRI were not realised. The discovery of incidental findings on
MRI (27%) were offset by appropriate radiological reporting.The
pathway is an example of worthwhile clinical commissioning by
demonstrating the benefits of GPs working with Neurologists
for training and support, (as proposed by the RCP 7) as well
as Radiologists, Commissioners and Community Pharmacists.
The overall reduction in neurological referrals suggests its cost
effectiveness.
It is proposed that GPs should continue to have access to
GP-MRI according to these guidelines. There is a need for
continued data collection to ensure referrals continue to be
made in accordance with the guidelines and quality of patient
care is maintained.
Acknowledgements
Dr Phillip Koopowitz and Alison Lowe, Chairman and
Operations Manager respectively, of the West Norfolk Referral
Management Centre for their assistance with the data collection.
Neil Bindemann of the Primary Care Neurology Society for
introducing KR to AD and for his encouragement. Dr Hilary
Lazarus for her help with the manuscript.
REFERENCES
1. National Institute for Health and Clinical Excellence. Headaches.
Diagnosis and management of headaches in young people and adults.
(Clinical Guideline 150.)2012. http://guidance.nice.org.uk/CG150/
Guidance.
2. Department of Health. Direct Access to Diagnostic Tests for Cancer.
Best Practice Referral Pathways for General Practitioners. DH; 2012.
3. Simpson GC, Forbes K, Teasdale E, Tyagi A, Santosh C. Impact of GP
direct-access computerised tomography for the investigation of chronic
daily headache. British Journal of General Practice 2010;60(581):897 901.
4. Howard L, Wessely S, Leese M, Page L, McCrone P, Husain K, Tong J,
Dowson A. Are investigations anxiolytic or anxiogenic? A randomised
controlled trial of neuroimaging to provide reassurance in chronic
daily headache 10.1136/jnnp.2004.057851. J Neurol Neurosurg Psychiatry
2005;76(11):1558-1564.
5. Thomas R, Cook A, Main G, Taylor T, Caruana E, Swingler R. Primary
care access to computed tomography for chronic headache. The British
Journal of General Practice. 2010; 60 (575): 426.
6. Taylor T, Evangelou N, Porter H, Lenthall R. Primary care direct access
MRI for the investigation of chronic headache. Clinical radiology. 2012;
67 (1): 24--27.
7. Royal College of Physicians. Local adult neurology services for the next
decade. Report of the Working Party. London:RCP,2011
Providing Expert Commissioning
Support in Neurology – what a
difference this can make
January saw the publication of ‘The Invisible Patients’ by
Sue Thomas is Chief Executive of
the Neurological Alliance (NA 2014), see page 20 of this
NHiS Commissioning Excellence.
Neurodigest. The report showed that neurology patients are
Her background is in nursing, with
tumbling through the gaps, because many commissioners have
extensive experience in primary
care and commissioning. Sue is
an alarming lack of understanding around local neurological
a Florence Nightingale Scholar,
populations and their needs. At a time when NHS England has
a Winston Churchill Fellow and
approved the first set of GP led clinical commissioning groups
has published over 150 papers
(CCGs) that will take on the responsibility for commissioning
and 20 book chapters. She
GP services in April (NHS England 2015), it has never been
regularly speaks at national and
international conferences.
more important for local commissioners to actively improve
their engagement with and understanding of neurology. It’s not
E: [email protected]
impossible to get these services right – models of excellent
Sue Thomas
practice across the country show it can be done. The major
hurdle is knowing where the problems lie and the steps from prompt treatment and management.
to take, many which the report highlights. Plus, delivering good
CSS can also help identify problem areas, like the top reasons for
services for long-term conditions tends to cost less overall – a
urgent care in neurology, which is very often not much different for
great incentive for CCGs.
other urgent care admissions - UTIs, chest infections and falls are
Various changes in the NHS are having a positive impact on common causes of admission but in neuro patients may result in a
neurology services and many of these are down to expert longer length of stay than someone from the general population.
commissioning support services (CSS) which can help ensure Managing patients with more proactive, preventative care could
changes are successfully implemented so that patients benefit result in better patient outcomes and reduced admissions.
NEURODIGEST • ISSUE 2 • 2015 • 9
Commissioning
NHS Vale of York CCG recognised their need for expert
neurology support and in partnership with a CSS identified how
services were meeting need. They also consulted with a wide
group of neurology patients to co-produce a new neurology
strategy for York mapping and building separate process pathways
for epilepsy, multiple sclerosis, Parkinson’s and motor neurone
disease (MND), so that everyone knows what to expect along
the disease journey.
Helping York understand their neurology data intelligence, the
CCG discovered that compared to other matched CCGs,
admissions for MND patients were low. This was the result of
support from a specialist MND nurse Doreen Foster whose
salary was supported by a local charity. The CCG saw the value
this nurse provided and took over funding for the post. This is
an excellent example of how data can uncover efficiencies in
the system as well as inefficiencies! GPs also highlighted a need
for more neurology education, and so the CCG has introduced
training in neurology for GPs and a new referral support system
has also been developed in partnership with Neurologists in the
provider unit so that GPs can make more effective referrals. It’s
too early to show results yet but neurology has been prioritised
in the York CCG QIPP programme (Quality, Innovation,
Productivity and Prevention).
Hull and East Yorkshire Hospitals NHS Trust worked with CSS to
map the Multiple Sclerosis patient journey from diagnosis through
the continuum of the disease process.Through this they identified
that there were significant delays in referral to treatment time
post diagnosis due to on-going specialist nurse referral delays.
By developing a new patient pathway, which included converting
an existing clinic into a new patient clinic, waiting times were
reduced from twelve to two weeks – a remarkable improvement
10 • NEURODIGEST • ISSUE 2 • 2015
for patients.
Finally, with the help of CSS the Strategic Clinical Network in South
East Coast has developed individual neurology data dashboards
for each of its 21 CCGs. This has been really helpful for raising
the profile of neurology and to help CCGs to understand their
neurology intelligence. Moreover, data is essential for the CCGs
to understand why there are demands on acute services so that
steps can be taken to rectify issues and bottlenecks in the system.
These are just a few examples of CSS in action – demonstrating
the value of expert neurology advice. The key to ensuring
effective commissioning of neurology services is to make sure
that CCGs have a baseline understanding of how services are
currently working and also understand what models of care can
provide better value. Right care defines value as:
•
•
the value that the patient derives from their own care
and treatment
the value the whole population derives from the
investment in their healthcare
Many relatively simple measures can help guarantee that in the
future neurology patients are no longer ‘invisible’ but placed
firmly on the NHS agenda.
REFERENCES
1.
2.
3.
Neurological Alliance (2015) The Invisible Patients Neurological Alliance
London
NHS England (2015) First CCGs take on commissioning of GP services
http://www.england.nhs.uk/ccg-details/ last accessed 24 February
2015
NHS Right care programme (2015) htcare.nhs.uk/index.php/programme/
last accessed 24 February 2015
Case Study
The Network Approach: A new model
for care provision for people with Motor
Neurone Disease (pwMND)
Ken Dawson is a Consultant
Neurologist, working mainly as a
General Neurologist in the Aneurin
Bevan University Health Board area
and also at the University Hospital
of Wales, Cardiff, where he also runs
specialist clinics for dystonia. He is
Neurology Lead and Co-Director of
the South Wales MND Care Network
and provides neurology input for the
local MND clinics covering Gwent and
South Powys.
Ken Dawson
E: [email protected]
Ruth Glew RGN, RMN, is a Registered
Genetic Counsellor, DipN(Lond),
BA, PGDip Therapeutic Counselling
(CBT). Prior to taking up her post
as Lead Care Co-ordinator for the
South Wales MND Care Network in
August 2012, Ruth has worked as
both a general and Mental Health
Nurse within the NHS. She then
became a Genetic Counsellor in
1992 with a particular interest in
Neurological conditions working in
Southampton, Oxford and Cardiff.
Ruth Glew
South Wales with a mixed rural and urban population of 2.3
million, areas with high levels of deprivation and a relatively aged
demographic profile, has a known population of people with
motor neurone disease (pwMND) of approximately 170 - 200.
Historically, there has been patchy and in areas poorly
coordinated care for pwMND. The model for specialist MND
care provision in the UK has been largely through specialist
regional Care Centres. In South Wales this effectively reached
only half of the MND population, who often had to travel long
distances to access specialist expertise if available.
The new network approach, established in 2012 and undergoing
continuing development has a key aim of equity of access to
and equality of care for people living with MND in South Wales,
which meets the MND Association standards of care, wherever
in the region they may be living. This is achieved through:
•
•
•
•
•
•
Improved support and co-ordination of services
Promotion of effective integrated working
between sectors
Development of multidisciplinary teams and local
MND clinics
Introduction of integrated care pathways
Education and training events
Regular steering group meetings
It allows for significant existing expertise across a range of
specialities and professions to be incorporated alongside
increasingly strong local teams, resulting in improved services.
Early palliative medicine input is a central feature.The service aims
to be proactive not reactive, allowing for timely interventions
such as feeding via gastrostomy and establishment of non-invasive
ventilation and avoidance of emergency situations, which have
often resulted in lengthy inpatient admissions. Delivery of care
makes use of existing health and social care teams and is cost
neutral in terms of those local teams involved.
the Network Lead for two days a week.There is also a part-time
Occupational Therapist. In future years, full funding for these
posts will be taken over by the South Wales Health Boards.
Early tasks for the network staff included ascertainment of the
existing case load and a baseline audit of services and patient
experience.
Once a patient is diagnosed with MND, they are referred to the
network personnel and receive an early initial Care-Coordinator
assessment at home and are discussed at a local care network
MDT meeting. At least three monthly MND MDT clinic
attendances take place, unless the patient is too unwell to travel,
in which case care at home with regular telephone follow-up or
home visits take place. At a single clinic visit, for many although
not yet all of the newly established local clinics, there is access
to expertise, including a Neurologist, Palliative Care Physician,
Respiratory Medicine Physician, Physiotherapist, Occupational
The network has combined funding via a grant from the MND Therapist, Speech and Language Therapist and Dietician, as well
Association with existing NHS funding already in place for MND as input from the Care Coordinators. End of life issues can be
service provision and has led to the establishment of Care- gently introduced as a matter of routine.
Coordinator posts based in the South-East and South-West
hubs, in Cardiff and Swansea respectively, one of whom is also To facilitate an open and integrated approach to patientNEURODIGEST • ISSUE 2 • 2015 • 11
Rehabilitation
centred care, we have developed a cross-organisation, all
Wales electronic patient record (EPR) system allowing data Pw MND
to be entered and accessed by any healthcare professional ‘The clinic is fantastic - having met the clinic
from any location.
team I feel reassured that I have the support I
The service provided by the South Wales MND Care Network need now and in the future.’
has the potential to be a useful model for shared learning & ‘It’s really good to be able to see everyone at
development in other areas of the UK with widely dispersed the same clinic, and the care is much more copopulations. We believe that this model of care has benefits for ordinated.’
both pwMND and professionals involved in their care. We are
presently developing an outcome framework to further evaluate Professionals
the impact of this approach on health care.
‘I feel much more supported in caring for
Although still a relatively new development, the feedback for the pwMND, I no longer have to deal with this
service has been very positive - see box right.
on my own and referrals are much easier.’
Acknowledgements: MND Association and South Wales ‘This is much better use of my time
and resources.’
MND Association branches.
Clarifying patients’ needs and
levels of services required
Professor Pam Enderby MBE
PhD is Professor of Community
Rehabilitation at The University of
Sheffield. She established the first
AAC centre in the UK in 1980, and
was awarded a Fellowship of the
College of Speech Therapists in
1983. In 1993 Professor Enderby
was honoured with an MBE for
services to speech and language
therapy.
Professor Pam Enderby
E: [email protected]
T: 0114 2220858
The myriad of services which are badged under various labels
such as ‘community based rehabilitation services’, ‘enablement
services’, ‘integrated care’ and ‘intermediate care’ have been
established to address a wide range of health and social care
needs of patients and are seen as significant and integral parts
of modernised health and social care services aiming to maintain
and restore the independence of older people who have a variety
of health needs.
Increasing pressure on secondary care related to demographic
changes has led to a year-on-year requirement to provide more
services in the community in order to facilitate early discharge
from hospital and avert avoidable admission. Frequently the
identification of the requirement for active rehabilitation as
compared to care and support are not clearly defined as the
needs of the patient/older person are not made explicit. This
makes it difficult to monitor the outcomes of services and to
configure most appropriate skill mix to serve patient/client needs.
This lack of clarity may be exacerbated by the development
of more integrated services stimulated by the relatively new
initiative of the Better Care Fund. (http://www.england.nhs.uk/
ourwork/part-rel/transformation-fund/bcf-plan/)
of two studies of intermediate care in the UK allows comparison
of changes over time relating to referral of patients to these
services1. The first study2 was carried out between 2005 and
2008; the second study3 collected data between 2009 and 2011.
It is clear from this that there has been a change in the types
of referrals to community-based intermediate care service
between the two time points, with a higher percentage of
patients in more recent years being inappropriately referred
to active rehabilitation in intermediate care services and who
did not require such intervention but required social support
and care. Whilst this trend is clear the reasons for this are
not. I would suggest that it is possible that this is associated
with increasing time pressures necessitating the need to pass
responsibility from the acute trust to a community trust without
having the opportunity to consider the particular needs of the
patient as they return home and the recognition that more
detailed assessment of needs is required. Additionally, these
studies confirmed that more recently, a higher proportion of
patients with more complex conditions were being referred
to community-based services needing a range of more active
interventions from the broader interdisciplinary team.
Management of the patient/client will be dependent on the
severity of the primary diagnosis in the context of other health
restrictions, retained abilities, potential and social circumstances.
As a result, it is difficult to determine the rehabilitation and care
needs of the patient based on their medical diagnosis alone.
Even cursory consideration of the range of patients who are
being supported by community-based services would conclude
that there is a requirement for a range of services which are
flexible and respond to clients needs but also can be described
in a meaningful manner to determine service strategy, staffing
levels, skill mix and assist audit, benchmarking and contribute to
planning.
Previous research has shown that community rehabilitation teams
Community services are generally required to intervene to and intermediate care services are highly2heterogeneous varying
assist with the consequences of conditions such as progressive greatly in terms of their staffing models . They are often based
neurological disease, a stroke, fall or chest infection. A synthesis on historical models rather than the needs of patient groups.
12 • NEURODIGEST • ISSUE 2 • 2015
Rehabilitation
Table 1:Ten Levels of Care
0. Patient does not need any health or social care support.
1. Patient/client needs prevention/maintenance programme
Aims:
• Prevent physical and psychological deterioration
• Prevent loss of independence
• Promote psychological well-being
• Encourage healthy living
• Promote positive attitude to independence
Services:
• Home/care support – social enablers
Setting:
• Own home – local community setting
Status of patient:
• Slight frailty or some physical/psychological threat to independent living
Include:
• Individuals with physical/emotional or cognitive disorder who will not benefit from active
rehabilitation but who need monitoring and advice
Exclude:
• Persons not at risk of deterioration
• Any person wishing to exercise personal responsibility for this
• Anyone receiving continuing health service where responsibility for this can be identified
and passed over
2. Patient/client needs convalescence
Aims:
• Encourage improvement and/or maintenance of independence
• Improve recuperation
• Wait for aids adaptions
• Wait for family adjustment support
• Adjust to new circumstances
Services:
• Home support }
• Residential } not specialist
• General care }
Setting:
• Step-down beds
• Own home
• Short term residential care
Status of patient:
• General malaise but generally well, mostly independent
Include:
• Those needing encouragement, extra time, verbal support, general enablement and
confidence building
Exclude:
• Any person whose family are willing and able to provide convalescence
• Any person needing active rehabilitation
• Those with ability to retain information, co-operate and understand rehabilitation
objectives
• Those more likely to benefit from programmes
• Those who are not making measurable progress with regular intervention
3. Patient/client needs slow-stream rehabilitation
Aims:
• Provide watchful waiting
• Provide assessment/observation
• Provide non-intensive rehabilitation/mobilisation
• Improve confidence
• Actively encourage, extend and facilitate increased speed of recovery
• Provide support programme which is being carried out by patient and carers
Services:
• Community rehabilitation team }
• Home support
} generalised/
• Day hospitals
} enablement skills
• Out-patient therapy }
Setting:
• Own home – nursing home care
• Intermediate care beds
Status of patient:
• Stable condition, moderate level of disability, partially dependent, potential for
improvement: may have combination of disabling conditions
Include:
• Those with mild impairments and disabilities who need specific guidance, treatment and
the opportunity to practise new approaches and techniques
• Those requiring rehabilitation with reduced stamina
• Those with slowly deteriorating conditions
Exclude:
• Those more likely to benefit from another programme
• Those with stamina and ability to benefit from more active rehabilitation
4. Patient/client needs regular rehabilitation programme
Aims:
• Provide rehabilitation to maintain steady and measurable progress
• Improve expected recovery path
Services:
• Community rehabilitation
• Home support
Setting:
• Home, out-patients, day hospital
Status of patient:
• Patient progressing in rehabilitation, further recovery expected
• Intensive rehabilitation not appropriately given
• Nature of patient’s condition and length of time since onset
Include:
• Those patients who can benefit from active targeted, goal-orientated treatment from a
multi-disciplinary team
Exclude:
• Patient with diffuse or generalised disability requiring team approach
• Patient unable to contribute to therapy programme
5. Patient/client needs intensive rehabilitation
Aims:
• Change from dependence to independence
• Reduce level of dependence on carers
• Achieve maximum level of function
• Resolve acute disabling conditions
Services:
• Community rehabilitation }
• Home support
} specialist
• Specialist therapy teams
} skills
• Specialised nursing }
Setting:
• Home
• Rehabilitation ward
• Intermediate care
• Day hospital
Status of patient:
• Medically very fit, motivated, but dependent, and identified by therapist as good
candidate for intensive rehabilitation
Include:
• Fit, motivated patient with (mostly) acute condition judged able to contribute
significantly to active treatment
• Patient requiring intensive treatment to reinforce new skills/overcome specific impairment
Exclude:
• Patient who will benefit from another programme
• Patient unable to tolerate level of intervention
• Patient not making measurable improvement
6. Patient/client needs specific treatment for individual acute
disabling condition
Aims:
• Targeted specific treatment by one profession
• Alleviate or reduce specific impairment/disability
Services:
• Specialised therapy/nursing
Setting:
• Community/domiciliary therapy
• Out-patient therapy
Status of patient:
• Medically stable, single acute or chronic disabling impairment which can be managed by
one specific professional
Include:
• Patient with single defined disabling condition
• Goal be clearly defined: intensity of input may vary
7. Patient/client needs medical care and rehabilitation
Aims:
• Actively treat medical condition in order to prevent/modify deterioration or secondary
sequelae while enabling patient to improve/maintain independence
• Appropriately manage medical condition while patient undergoing multidisciplinary
rehabilitation
Services:
• Medical care with generalised/specialised rehabilitation support
• Nursing care
Setting:
• Home (less often)
• Rehabilitation ward
• Nursing home
Status of patient:
• Unwell/unstable medical condition, disabled specifically or generally
Include:
• Patients requiring specialised medical intervention as part of rehabilitation programme
Exclude:
• Patients too unwell/unstable to benefit from rehabilitation component
8. Patient/client needs rehabilitation for complex, profound, disabling condition
Aims:
• Provide rehabilitation as part of long-term management of condition
• Maximise level of function, prevent secondary disabling condition and improve quality of
life
• Provide particular provision of services related to those with low-incidence specialised
cognitive and physical disorders
Services:
• Community rehabilitation – specialist multidisciplinary team
Setting:
• Home, regional unit, rehabilitation ward
Status of patient:
• Patient will have prognosis of longstanding complex needs requiring specialist medical
and multi-disciplinary rehabilitation and multi-agency input, such as progressive
neurological disease, head injury, complex neurological and physical trauma
Include:
• Patients requiring specialised multidisciplinary input
Exclude:
• Any client whose needs can be met in other programmes stated above
9. Patient/client needs palliative care:
Aims:
• Provide end of life support and care to patient and family. Pain relief, comfort and dignity.
Services:
• Nursing, medical, care staff, interdisciplinary team.
Setting:
• Home, hospice, nursing home
Include:
• Persons with terminal conditions nearing end of life.
NEURODIGEST • ISSUE 2 • 2015 • 13
REVIEW
Outcomes are difficult to compare and consequently their cost
effectiveness is difficult to establish. To date there has been a
lack of information available to community care practitioners
to help plan and compare resource needs. Indeed many of the
existing models or taxonomies detailed in community studies
have been used to describe only one attribute of a communitybased service, such as the purpose of the service.
patient/client does not need any health or social care support’
and ‘the patient/client needs palliative care’. These two were
added following the more recent study1 which indicated the
increased number of individuals being referred to communitybased services but who did not require them and the increasing
number of patients receiving palliative care in their own homes
and being supported by community services. See Table 1.
Patients using intermediate care tend to be older (initial policies
stipulated that they should be over 65 and have multiple
morbidities). However their admission to intermediate care
should indicate that they are medically stable and require some
support to help them function more fully in their chosen living
environment. This support may be in the form of rehabilitation
to facilitate independence, or social care, to supplement skills, to
maintain the status quo or to help with daily activities.
The synthesis of the two studies1 demonstrated that the LOC
Tool does differentiate on the basis of dependency, length of
stay, and service costs and was associated with outcomes as
measured on the Therapy Outcome Measure. However it did
not differentiate on the basis of staffing.
As a result of this difficulty, Enderby and Stevenson (1990)
developed the 8 Levels of Care Tool (LOC), a taxonomy that
identifies the needs of the patients, rather than the structure
of the service. This was proposed to assist in the development
of a range of integrated community-based services with the
appropriate skill mix and formalising the approach adopted by
many health and social care providers who determine the needs
of an individual having completed an assessment of the situation.
The classification system aimed to identify service objectives and
was developed following a series of focus groups, forums and
workshops with patients, carers and a broad range of community.
More recently there has been a development of integrating a
broader range of health and local authority services further
stimulating the requirement for greater clarity in identifying the
particular needs of a patient/client. Thus the 8 Levels of Care
has been expanded to incorporate a further two: namely, ‘the
Conclusion
Using the ‘level of care’ assisted the audits detailed in the studies
of intermediate and community-based services1,2 bringing a
greater understanding of the needs of clients and the range
of services required. I would suggest that evaluation of the
integrated services stimulated by the Better Care Fund may be
held by using this approach.
REFERENCES
1.
2.
3.
4.
Ariss SM., Enderby PM., Smith T., Nancarrow S A., Bradburn MJ. Et al. 2015
Secondary Analysis and Literature Review Of Community Rehabilitation
and Intermediate Care: an Information Resource Health Service Delivery
Research 2015. 3 (1)
Nancarrow S., Moran A., Enderby P. et al. (2010) The Relationship between
workforce Flexibility and the Costs and Outcomes of Older Peoples
Services. Report National Institute of Health Research, London.
Nancarrow S A., Enderby P., Ariss SM., Smith T., Booth A., Et al. (2012)
The Impact of Enhancing The Effectiveness of Interdisciplinary Working.
Southampton. National Institute of Health Research. SDO
Enderby P & Stevenson J (2000). What is Intermediate Care? Looking at
Does DNA Methylation
hold the key to Parkinson’s Disease?
collectively account for less than 5% of cases of PD.
Dr Nigel Williams is a Reader in
molecular genetics at the MRC
Centre for Neuropsychiatric
Genetics and Genomics, Cardiff
University. His research has
identified genetic loci that increase
risk to schizophrenia, ADHD and
frontotemporal dementia. Currently
he leads a research team focused
on gaining a better understanding
of neurological disorders, in
particularly Parkinson’s Disease.
Dr Nigel Williams
E: [email protected]
The DNA changes that underlie PD in cases where there is not
a strong family history of the illness have proved more elusive.
In the last decade this problem has been tackled by a number
of large-scale studies. These studies have collectively identified
DNA alterations at more than 18 locations in our genome
that increase our risk of developing the form of the illness that
accounts for 95% of PD cases. However, little is known about
how these DNA changes increase risk to disease. As most do
not directly affect gene function, it is likely that they increase risk
through more subtle biological mechanisms than those seen in
rare inherited cases of the disease.
What is DNA Methylation
DNA methylation (DNAm) is an important, well-characterised
chemical modification to DNA that influences gene function
without changing the DNA sequence. Rather like a light switch
determines whether a bulb is on or off, DNAm can act as a
molecular switch that regulates whether a gene is active or
So far, a number of changes have been identified in the DNA of silenced (Figure 1).
patients with a strong family history of PD that either lead to,
or greatly increase the chances of developing the disease. These Importantly, we can now accurately measure DNAm, and this
findings have greatly improved our understanding of the disease has allowed researchers to establish that we acquire changes
process. However, as these DNA changes are very rare, they in DNAm as we age, and that these can be influenced by
The reasons we develop Parkinson’s Disease (PD) are complex.
As in diseases such as rheumatoid arthritis and type-2 diabetes,
the large majority of cases appear to be caused by a combination
of genetic and environmental risk factors.
14 • NEURODIGEST • ISSUE 2 • 2015
Review
Figure 1. DNA methylation regulates gene expression
environmental factors such as diet, smoking and exposure to
toxins. Returning to our examples of rheumatoid arthritis and
type-2 diabetes, research into these conditions has demonstrated
a correlation between DNAm and DNA sequence changes that
increase the risk of developing these diseases.
Changes in DNA Methylation can mediate risk to
disease
The importance of DNAm in the causation and progression of
cancer has also been well established by researchers. As these
chemical modifications are potentially reversible, they have
become the focus of novel anti-cancer therapies. If we can gain
a similar understanding of the role of DNAm in PD, we may
see similar gains. The neuropathology of PD is well understood,
and good quality post mortem tissue is available, making PD
particularly well suited to investigations of DNAm. But despite
this, there have been few relevant studies.
DNA Methylation and Parkinson’s Disease?
At Cardiff University’s MRC Centre for Neuropsychiatric
Genetics and Genomics, we have a research program examining
the role that DNAm plays in the development of PD. We are
doing this by collecting DNA from donated post-mortem
tissue from regions of the brain known to be affected in PD
(e.g. the substantia nigra). Our research takes in large numbers
of PD patients and controls matched for age, sex and ethnicity.
Using state-of-the-art technology, each DNA sample is being
comprehensively assessed in a process that examines over
450,000 DNAm changes spanning the entire human genome.
Figure 2. Mechanisms by which DNA methylation could influence
Parkinson’s Disease
have a major impact on the clinical diagnosis, prognosis and
future treatment of PD.
Even more exciting is the fact that DNAm modifications and
their related biological mechanisms are potentially reversible,
and that drugs are already being developed to target these
mechanisms in the brain. With this in mind, our research could
help highlight new areas for the development of therapies for
this devastating disease.
We have hypothesised that the role of DNam might take three
forms (Figure 2). Firstly, it is possible that changes in DNAm
have an effect on the likelihood of developing PD for those who
already carry a genetic risk of the disease. To investigate this, we
will examine whether having PD genetic risk variants affects the
accumulation of DNAm as we age, in turn affecting gene function
and increasing risk of developing the disease.
Clavis
TM
Hand-carried device for
EMG/STIM-guided injections
The ClavisTM offers crystal-clear EMG recording
quality for situations such as guided injection,
combined with the convenience of being a
compact, hand-held device.
Secondly, DNAm may increase risk of developing PD
independently of an individual’s genetic risk. Age, diet, stress and
toxins have already been correlated with the onset and severity of
PD, and have also been shown to influence DNAm. By comparing
changes in DNAm between PD and control samples we could
take an important first step in establishing how environmental
factors affect risk of developing the illness.
A final possibility is that changes in DNAm are just an inevitable
consequence of the disease. If this is the case, it could be
established by comparing PD patients at different stages of the
disease.
Final Remarks
Identifying DNAm changes that either affect our risk of developing
PD or are correlated with the way the disease progresses could
www.optimamedical.com
020 3058 0850
NEURODIGEST • ISSUE 2 • 2015 • 15
Clavis ad.indd 1
16/07/2015 13:54
Rehabilitation
Multidisciplinary Neuro-rehabilitation
and precisely targeted botulinum toxin
restores hand function following a
severe brain injury
Dr Harriss
He has over twenty years
experience of multidisciplinary
spasticity management, and he
offers an impressive track record
of establishing spasticity services
-internationally, within the NHS, and
most recently within the charitable
sector. As a Canadian-trained
Consultant in Physical Medicine
and Rehabilitation he brings a
goal-focused and outcomedriven perspective to the UK. Dr
Harriss emphasises objective
assessments, and he insists on the
routine use of ultrasound or EMG/
electrical stimulus-guidance; he
attributes this attention to detail
to his patients’ often life-changing
recovery of function.
Dr Harriss is Medical Director
of Queen Elizabeth’s
Foundation for Disabled
People, Clinical Lead in
Rehabilitation Medicine
at the Lane Fox Clinic, St
E: [email protected]
Thomas Hospital London, and
Honorary Senior Lecturer at
KCL.
Amy Dennis-Jones (PT),
Nicolette Hugo (OT)
On admission, physically, RC presented with:
•
•
•
•
•
•
Increased tone in both upper limbs, specifically within his
pectoral muscles, biceps and wrist and finger flexors
Loss of range of movement
Decreased grasp and fine motor movements in both
upper limbs, including: span, cylindrical, key, ball, pincer
and tripod grips. He however had some lateral grip in his
right upper limb
Decreased active and controlled upper limb movement
and dexterity
Impaired sensation (Light touch and proprioception were
reduced throughout)
Left side affected more than right side
UL ROM on admission:
Right
Left
Shoulder flexion
100o
75o
Shoulder abduction
90
o
90o
Elbow extension
-50o
-30o
Wrist extension
25o
-30o
We use our hands to engage with the world, relying on a variety
of discrete grasps to perform countless essential daily tasks. Ashworth on admission:
At the Queen Elizabeth’s Foundation (QEF) our emphasis is
Right
Left
Joint affected
on restoring abilities through a multi-disciplinary approach
Elbow flexors
2
3
including medical treatments and rehabilitation. At the Centre
Wrist flexors
2
4
we have established a treatment protocol for spasticity in the
upper limbs which seeks to restore hand function, without
risking loss of strength in unaffected muscles.
Mr RC had difficulty participating in standardised formal UL
Mr RC’s history illustrates the importance of precisely testing. Within the Rivermead motor assessment for the upper
targeted botulinum toxin treatments, combined with specialist limb component he initially scored 2/15 on the left and 3/15 on
multidisciplinary, goal-directed therapies. He was 19 yrs old, the right.
looking forward to a career as a Police Constable, when as
the passenger in a police car he suffered a severe brain injury:
he sustained a left frontal lobe haematoma and diffuse axonal
injury. His injuries were life-threatening, and he spent several
months on acute medical and surgical wards before being
admitted for rehabilitation.
Functionally, Mr RC tried, with little success, to engage his right
upper limb within everyday tasks of living (e.g. in washing and
dressing his upper part of his body and feeding himself). In
feeding he had difficulty loading food onto his spoon and taking
this to his mouth and was also unable to use a knife and fork
to feed himself.
When he was admitted to QEF in October of 2013 he had
limited functional hand movements and RC was left entirely
dependent on his carers for all of his needs.
RC was wheelchair dependent however his upper limbs impeded
his ability to use a powered wheelchair independently.
Botulinum toxin injections were administered approximately
quarterly through 2013 and 2014 using Clavis EMG/stimulus
guidance in an attempt to allow the shoulders, elbows and
wrists to be brought back to a more functional resting position.
Great care was taken not to treat the finger and thumb flexors:
the goal was to enable restoration of active hand function.
Mr RC participated within a full inter-disciplinary team
rehabilitation programme including Physiotherapy, Occupational
Therapy, Speech and Language Therapy, Psychology, Education
and Vocational.
16 • NEURODIGEST • ISSUE 2 • 2015
Management:
Mr RC’s care also included an IDT spasticity management
Rehabilitation
programme. His oral anti-spasticity medications were reviewed
before he came to QEF whereby oral Baclofen was reduced
to relieve truncal weakness. Focal spasticity was treated with
several Botulinum toxin injections, always using EMG/stimulus
to precisely target flexor muscles within his upper limbs,
administered approximately quarterly through 2013 and 2014
using Clavis EMG/stimulus guidance to precisely target flexor
muscles within his upper limbs.
Following this, bi-lateral
soft/scotch wrist and
finger extension resting
splints were fabricated
to specifically target his
hand and wrists only
as his elbow range of
movement had improved
dramatically.
Great care was taken not to treat the finger and thumb flexors:
the goal was to enable restoration of active hand function.
Maximising benefits using specialist technology and
interventions
Goals of Botulinum Injections
During active upper limb rehabilitation, specialist equipment
• Increase passive and active range of movement at wrist
and techniques were used to maximise functional gains. These
and hands
included FES, SAEBO MAS, SAEBO glide programme, and task • Reduced flexor tone at wrists and hands
specific practice.
• Increase functional ability and use upper limbs/hands for
reach/grasp.
• Facilitate the implementation of an effective splinting
regime
Units - Rights
side (Xeomin)
Units Left side
(Xeomin)
Flexor Carpi Ulnaris flexion
40
40
Flexor Carpi Radialis
40
40
Flexor Digitorium Superficialis
40
40
Muscles injected
Flexor Digitorium Profundus
40
40
Biceps
40
40
FES was used to reinforce wrist extension. Thereafter wrist
extension was reinforced through practice and functional grasp
work.
Following initial botulinum toxin injections at QEF two-joint
SaeboMAS:
splints and bilateral soft/scotch splints were fabricated. These
helped to control elbow extension and supported the hand
and wrist in a more neutral position. These were worn every
day for several hours for a period of 8 weeks. Splints were
removed during active upper limb rehabilitation.
The SaeboMAS is a weight support upper limb exerciser, which
takes the weight of Mr RC’s upper limbs allowing him to move
his arms freely in a gravity eliminated plane. This afforded the
team an opportunity to work on RC’s postural control in
Botulinum injections were then repeated with the following
sitting whilst allowing his upper limbs to dissociate and move
target muscles below.
away from his trunk. The functional task of feeding was used in
conjunction with the SAEBO MAS to allow Mr RC to improve
Units Units the movements involved in feeding, along with increasing his
Muscles injected
Right side
Left side
endurance. The activity was graded by adjusting the gravity and
(Xeomin)
(Xeomin)
task requirements.
10 each muscle
(x4)
-
Flexor Carpi Radialis
-
50
Flexor Carpi Ulnaris
-
50
Flexor Digitorium Profundus
30
-
With a combination of botulinum toxin, splinting regime and
upper limb rehabilitation, the tone and range of movement in
Mr RC’s upper-limb improved dramatically.
Flexor Digitorium Superficialis
30
-
With much-improved range of movement and normalisation
Lumbricals
Reductions to impairment:
NEURODIGEST • ISSUE 2 • 2015 • 17
Rehabilitation
of tone, he can now perform active functional movement in his brush his teeth.
• He is now able to feed himself using a fork or a spoon,
upper limbs.
as well as cut some food (e.g half an apple) using a knife
ROM on discharge:
and a fork.
Right
Left
Shoulder flexion
Full
Full
Shoulder abduction
150
150
Elbow extension
Full
Full
Wrist extension
Full
Full
Joint affected
Right
Left
Elbow flexors
1
1+
Wrist flexors
1+
2
Ashworth score on discharge:
Functional improvements:
Mr RC is now actively able to use his upper limbs for meaningful The Future
tasks:
Mr RCs will continue to receive botulinum toxin treatments,
• Due to the improvements within the range and power of always under EMG/stimulus guidance, along with ongoing
his upper limbs in combination with the increase in therapies. His hand function has steadily improved over the
postural control, Mr RC can transfer instead of being past year, and he has regained even more independence since
hoisted
leaving QEF. He lives at home, with his family rather than in a
• Mr RC can independently operate his iPad and iPhone care home, which might have been his only option had we not
and touch screen devices.
helped him to improve his upper limb function. He will continue
• Mr RC can now use a joystick to mobilise his powered to benefit from ongoing botulinum toxin treatments, always
wheelchair.
under EMG/stimulus guidance, along with ongoing therapies to
• Mr RC can now brush his hair, dress his upper limbs and further improve his upper limb functioning.
SonoSite’s X­Porte® ideal
for regional anaesthetic
procedures
A SonoSite X­Porte® point-of-care
ultrasound system is proving a key
asset for regional anaesthesia at the
Queen Elizabeth Hospital King’s Lynn
NHS Foundation Trust, as consultant
anaesthetist Dr James Stimpson explained: “Queen Elizabeth
was one of the first trusts in the UK to set up an ambulatory
service for major shoulder surgery, and has been using
ultrasound for regional anaesthetic procedures since 2004,
when it purchased a SonoSite MicroMaxx® system. Since then,
as the use of ultrasound has increased and the technology
continued to advance, further systems have been added,
including two SonoSite S-Nerves™ and, more recently, an
X­Porte.”
“The beauty of the X-Porte is its simplicity, particularly for the
younger generation of anaesthetists that have grown up with
smartphone technology. Its appearance instils confidence,
it boots up quickly and the touch screen interface is very
intuitive to use; simple plug-and-play operation means that
you can literally turn it on, pick up the probe and instantly
have the correct settings to generate a functional image.
The quality of the image produced is just fantastic, and the
resolution is brilliant, giving much clearer differentiation of
nerve tissue from other structures. Our ability to pick out
small cutaneous nerves has been revolutionised, allowing us
to perform more selective regional anaesthesia and enabling
patients to mobilise and return home far sooner than would
otherwise be possible.”
For more information about FUJIFILM SonoSite products:
T: +44 (0)1462 341151,
E: [email protected] • www.sonosite.co.uk
18 • NEURODIGEST • ISSUE 2 • 2015
Review
Rapid and reliable management of
early-morning OFF periods in patients
with Parkinson’s disease
Many physicians who treat patients with Parkinson’s disease
(PD) may not be aware that up to half of them could be suffering
from treatable early-morning OFF (EMO) periods that can
significantly impair their ability to get up in the morning and
get on with their day1.The symptoms, dominated by non-motor
problems such as anxiety, pain and urinary urgency, often go
unreported to the physician unless the patient is specifically
questioned and therefore continue untreated, despite easy and
effective options being available. EMO periods that occur due
to delay in the onset of the first daily dose of levodopa can be
due to gastrointestinal (GI) problems, which may themselves go
unrecognised, and are known to be common across all stages
of PD. EMO periods can be easily managed with therapeutic
options that bypass the GI route, such as transdermal rotigotine,
but more effectively with subcutaneous apomorphine
injection.2,3
PD patients treated with oral levodopa gradually start to
experience OFF periods where the administered dose does
not adequately control their motor symptoms for the entire
period of time before the next dose is taken.4,5 Oral levodopa
is considered as the best therapy for the initial management of
motor symptoms in PD, however it is recognised that over time,
and sometimes seen within two years of starting oral levodopa,
the initial long-duration response becomes progressively
shorter, leading to increasingly frequent and longer OFF
periods. In addition, when a dose of oral levodopa is
administered, there may be a delay in the onset of clinical
effect – delayed ‘ON’ – which can contribute to an increase in
OFF period duration.5
The clinical effect of oral levodopa relies on it being emptied
from the stomach effectively and then reaching the small
intestine where it is absorbed. Therefore, any delay in gastric
emptying will impair delivery of levodopa to the small intestine
and result in a delayed onset of its clinical effect to relieve motor
symptoms. GI dysfunction is common in PD patients and includes
symptoms such as poor control of salivation, dysphagia, delayed
emptying of the stomach and constipation.6 Delayed emptying
of the stomach, also known as gastroparesis, is frequently found
in both early and advanced PD, and may even be present before
motor symptoms are apparent, but often goes unrecognised.7
Further studies have confirmed that impaired gastric emptying
can alter the pharmacokinetics of an oral levodopa dose and is
likely to be a causative factor underlying the delayed onset of
effect in PD patients and also dose failure.8,9
EMO periods due to delay in the onset of the first daily dose
of levodopa have been reported in up to 50% of patients who
have been receiving treatment for several years.10-12 In addition,
a recent international, multicentre study has shown that EMO
periods not only result in impaired motor function in PD
patients but also impact a range of non-motor functions as well,
including urinary urgency, anxiety, dribbling of saliva, pain and
low mood.13 Unsurprisingly, EMO periods have been reported
to have a significant impact on the quality of life (QoL) of PD
patients and impact on their independence and ability to get
K. Ray Chaudhuri
Professor of Movement Disorders,
Director of the National Parkinson
Foundation Centre of Excellence,
Department of Neurology, King’s
College and King’s College
Hospital, and Kings Health
Partners, London, UK
E: [email protected]
out of bed and go to the toilet, so it is important that they are
recognised promptly and managed effectively.14
To avoid the problems associated with delayed gastric emptying,
treatment strategies that employ non-oral medications which
bypass the GI tract have therefore been investigated with
considerable success. Apomorphine is a potent dopamine
agonist that can be administered subcutaneously, thereby avoiding
the GI route, and has been shown in previous clinical studies to
provide fast (within 4–12 minutes) and consistent improvement
in motor symptoms of PD.12,15 More recently, interim results
from the ongoing Phase IV, multicentre, open-label study – AMIMPAKT: Apokyn for Motor IMProvement of Morning Akinesia
Trial – have demonstrated that intermittent subcutaneous
apomorphine injection (APO-go PEN) can provide rapid and
reliable improvement in ‘time to turn ON’ (TTO) in PD patients
who are experiencing EMO.3 The study includes PD patients
from 12 centres across the USA and is examining the change
from baseline in average daily TTO, recorded in each subject’s
diary, when they replace their usual morning dose of levodopa
with subcutaneous apomorphine injection. Analysis of data for
the first 50 patients found that apomorphine injection resulted
in a significant improvement in TTO with an average reduction
of 37 minutes compared with levodopa treatment (p<0.0001),
and also reduced the number of dose failures. Overall, 95% of
patients achieved a significant reduction in TTO. Apomorphine
injection was well tolerated and in addition to the motor benefits
there were also improvements in measures of QoL.
Apomorphine is available as an easy-to-use pen formulation
for intermittent subcutaneous injection (APO-go PEN) that
provides patients with a convenient way to relieve motor
symptoms that occur during EMO periods, restoring them to
the ON state quickly and enabling them to continue with their
daily activities.
REFERENCES
1. Rizos A, Kessel B, Martinez-Martin P, Odin P, Antonini A, et al. (2013) Early
morning off periods in Parkinson’s disease: Characterisation of non motor
patterns and treatment effect: An international study. 9th International
Congress on Mental Dysfunction and other Non-Motor Features in
Parkinson’s Disease and Related Disorders. Seoul, Korea.
2. Trenkwalder C, Kies B, Rudzinska M, Fine J, Nikl J, et al. (2011) Rotigotine
effects on early morning motor function and sleep in Parkinson’s disease:
a double-blind, randomized, placebo-controlled study (RECOVER). Mov
Disord 26: 90-99.
NEURODIGEST • ISSUE 2 • 2015 • 19
Service development
3. Isaacson S (2014) Apomorphine penject – emerging evidence and
treatment strategies for delayed on and off periods in Parkinson’s disease.
European Medical Journal Neurology 1: 27-35.
4. Marsden CD, Parkes JD (1976) “On-off” effects in patients with Parkinson’s
disease on chronic levodopa therapy. Lancet 1: 292-296.
5. Melamed E, Bitton V, Zelig O (1986) Delayed onset of responses to single
doses of L-dopa in parkinsonian fluctuators on long-term L-dopa
therapy. | Clin Neuropharmacol 9: 182-188.
6. Pfeiffer RF (2003) Gastrointestinal dysfunction in Parkinson’s disease.
Lancet Neurol 2: 107-116.
7. Tanaka Y, Kato T, Nishida H, Yamada M, Koumura A, et al. (2011) Is there a
delayed gastric emptying of patients with early-stage, untreated
Parkinson’s disease? An analysis using the 13C-acetate breath test. J
Neurol 258: 421-426.
8. Doi H, Sakakibara R, Sato M, Masaka T, Kishi M, et al. (2012) Plasma
levodopa peak delay and impaired gastric emptying in Parkinson’s
disease. J Neurol Sci 319: 86-88.
9. Chana P, Kuntsmann C, Reyes-Parada M, Saez-Briones P (2004) Delayed
early morning turn “ON” in response to a single dose of levodopa in
advanced Parkinson’s disease: pharmacokinetics should be considered. J
Neurol Neurosurg Psychiatry 75: 1782-1783.
10. Stocchi F, Jenner P, Obeso JA (2010) When do levodopa motor fluctuations
first appear in Parkinson’s disease? Eur Neurol 63: 257-266.
11. Parkinson Study Group (2000) Pramipexole vs levodopa as initial
treatment for Parkinson disease: A randomized controlled trial. Parkinson
Study Group. JAMA 284: 1931-1938.
12. Dewey RB, Jr., Hutton JT, LeWitt PA, Factor SA (2001) A randomized, double blind, placebo-controlled trial of subcutaneously injected apomorphine
for parkinsonian off-state events. Arch Neurol 58: 1385-1392.
13. Rizos A, Martinez-Martin P, Odin P, Antonini A, Kessel B, et al. (2014)
Characterizing motor and non-motor aspects of early-morning
off periods in Parkinson’s disease: an international multicenter study.
Parkinsonism Relat Disord 20: 1231-1235.
14. Chapuis S, Ouchchane L, Metz O, Gerbaud L, Durif F (2005) Impact of
the motor complications of Parkinson’s disease on the quality of life.
Mov Disord 20: 224-230.
15. Pfeiffer RF, Gutmann L, Hull KL, Jr., Bottini PB, Sherry JH (2007) Continued
efficacy and safety of subcutaneous apomorphine in patients with
advanced Parkinson’s disease. Parkinsonism Relat Disord 13: 93-100.
Focusing on the ‘invisible patients’
Alex Massey
engage with the challenge of improving neurological services.
For its report The Invisible Patients: Revealing the state of
neurology services, the Neurological Alliance carried out a
Freedom of Information audit of all CCGs in July 2014. 91%
of CCGs responded, but the replies showed that far too many
are not carrying out the key processes that enable a strategic
approach to service improvement in neurology. For example,
as few as 20% of CCGs have ever carried out an assessment of
the number of people using neurological services in their area,
while fewer than 15% have assessed the costs relating to the
provision of neurological services locally. Only a third of CCGs
have mechanisms in place to obtain feedback from people living
E: [email protected]
with neurological conditions locally regarding their experiences
The reforms to the NHS introduced by the controversial 2012 of the services they receive.
Health and Social Care Act brought about significant changes
This represents a major missed opportunity. NHS spending on
to key structures and processes in health and social care. For
neurological conditions has soared by 200% over the past ten
neurology in particular - a historically neglected grouping of
years, which also saw a dramatic rise in emergency hospital
conditions, which consumes an ever-expanding portion of
admissions for neurological conditions, reaching 700,000 in
the NHS budget - the reforms represented both a challenge
2012/13. A recent Neurological Alliance survey of just under
and an opportunity. Would the creation of a new cohort of
7,000 neurological patients found that almost 40% of people
clinical commissioning groups (CCGs) lead to disruption of
diagnosed with a neurological condition waited at least a year
existing services? Or could the new commissioners lead the
for that diagnosis, while over 30% saw their GP five or more
development of new and better pathways of care for the 10
times before finally accessing a specialist neurologist. Care
million people living with a neurological condition in England?
coordination is often very poor, and over 70% of people with
Reform of this magnitude will always carry both risks and neurological conditions do not receive a care plan, even though
benefits. Clinical commissioners have faced the difficult task of the majority of neurological conditions are long-term. There
taking on a swathe of new commissioning responsibilities at a is clear scope to improve outcomes and alleviate pressure on
time when funding is stretched and the NHS is grappling with budgets through better designed pathways of care, but only a
the challenges of an ageing population.There is little doubt that minority of CCGs appear to be engaging with this challenge.
the transition to clinical commissioning has led to disruption
This must change. At a time when NHS England is planning
which has, in some cases, impeded the NHS’s efforts to develop
to expand CCGs’ commissioning responsibilities for neurology
more effective, better-integrated services with a stronger
to include involvement in specialised commissioning, it has
preventative focus.
never been more important for local commissioners to
At the same time, clinical commissioners find themselves faced actively improve their engagement with and understanding
with a huge opportunity to transform care and outcomes for the of neurological conditions. It can no longer be acceptable for
people living in their area. With a stronger local presence than people living with these conditions to be ‘invisible patients,’
their Primary Care Trust predecessors, CCGs are well-placed overlooked by the key decision-makers and budget holders
to take a strategic approach to service improvement, based on within today’s NHS. We need urgent action now, so that the
a better understand of local needs and priorities. Unfortunately, millions of people with neurological conditions receive the care
the available evidence suggests that many CCGs are failing to they need and deserve.
Alex is Senior Policy and Campaigns
Adviser with the Neurological Alliance
and is a patient voice representative
on the Neurosciences Clinical
Reference Group. He previously
worked for ACEVO, the charity leaders’
network, where he led their work on
public service reform. Prior to joining
ACEVO, he worked as a Research
Fellow at the think-tank Policy
Exchange.
20 • NEURODIGEST • ISSUE 2 • 2015
Neurology Networks
Neuroscience Strategic Clinical Networks
Introduction
The commissioning and provision of neurological services is complex, with responsibilities split across clinical commissioning groups (CCGs),
specialist commissioners, community services, acute hospitals, primary care, neuroscience centres and social care. To create alignment in the
system across all stakeholders – providers, commissioners and patients – the NHS established Strategic Clinical Networks in England.
There are twelve Strategic Clinical Networks (SCNs) and their role is to encourage collaborative working across the boundaries of
commissioning and provision, where a whole system, integrated approach is required.
One key priority of the Neuroscience SCNs is to raise the profile of neurology by working with commissioners to develop clear pathways of
care that identify the following issues:
1. 2.
3. 4. 5. Impact of neurological presentations on acute services.
Mapping of funding responsibility for services, NHS England or CCGs.
Best practice integrated pathways to reduce delays in diagnosis, treatment and rehabilitation, to reduce mortality and levels of
disability.
Identify how and where service provision can be improved to free up capacity in the system e.g. through redesign of clinics and
improved primary care symptom management.
Improve patient related outcomes and experience through care closer to home.
East Midlands
East of England
Yasmin Akhtar
Victoria Doyle - Quality Improvement
The Neurology Division of the East Midlands
SCN, led by Professor Chris Ward and Helen
McCloughry, is currently focusing on two areas
where the quality and quantity of services
is variable. The first of these is neurological
rehabilitation. The Clinical Advisory Group’s
agreed priority is to develop commissioning
guidance and an exemplar service specification
for commissioners. Standards and principles
established by the East Midlands Rehabilitation
Programme and by the NSF for Long-term
Conditions will underpin this work. Coordinated
rehabilitation interventions often make the
difference between a person being able to
remain at home and being admitted to hospital
or residential care, and are often essential for
continuation of employment and other social
and family roles. We distinguish rehabilitation
from care, which is required to maintain, rather
than to change and improve quality of life. The
primary requirement in our model is for service
users to have up to date rehabilitation plans
alongside their care plans.
The cost savings that
rehabilitation can achieve
depend on effective co-ordination
The cost savings that rehabilitation can achieve
depend on effective co-ordination and we
therefore use a precise concept of what
constitutes a team. Key performance indicators
(KPIs), especially those that reflect outcomes
for service users and their families, are central
to our work and we are developing regional
consensus on a core set of indicators. We are
using existing frameworks, including the NSF,
the Neurological Alliance and the Rehabilitation
programme as a basis for KPIs which will
sample the structure, process and outcomes of
community neuro-rehabilitation and also track
the dimension of prevention, a crucial but often
forgotten dimension of rehabilitation.
We welcome enquiries and advice about our
work. Please contact: Yasmin Akhtar, email:
[email protected] or call 01138 255343.
Lead for Neurological Conditions
E: [email protected]
Dr Max Damian - Neurologist and
Clinical Lead for Neurology with the East of
England SCN.
Mary Emurla - Network Manager for the Mental
Health, Dementia, Neurology, Learning Disability
and Autism SCN for the East of England
Since February 2014, The East of England SCN
has been focusing on improving the management
of people with epilepsy and improving the
rehabilitation of people with a neurological
condition causing disability. These priorities
were developed from a large region wide
stakeholder event in November 2013 as well
as direction from the National Clinical Director,
David Bateman. The SCN also inputs into the
national SCN work around neurology standards,
community neuro rehab standards and headache
management.
In June 2014, the SCN ran a large multistakeholder event on improving the care
of people with epilepsy which provided an
excellent source of information of what people
from around the region thought the gaps
were. One of the main themes that arose was
education especially within primary care. In
response to this, the SCN and key stakeholders
have developed two epilepsy eLearning modules
for primary care which are due to be launched
in summer 2015.
Another key theme from the event was
improving the management of people within
A&E departments.This tied in with the release of
the NASH2 study which also highlighted gaps in
the treatment of patients within A&E. The SCN
and key stakeholders have developed
three epilepsy guidelines for improving the
management of people with epilepsy which are
entitled “First Adult Seizure in an Emergency
Department”, “Management
of
Status
Epilepticus” and “Referral to Specialist Epilepsy
Clinics” which were launched in spring 2015.
The SCN is piloting a telecare link between a
neuroscience centre and district general hospital
for the management of people presenting in A&E
with severe cluster seizures or status epilepticus
to improve access to a Neurologist during this
critical time. The results of the pilot will be
available in summer 2015.
In October 2014, the SCN ran a region wide
stakeholder Master Class on Commissioning
and Contracting for High Quality Neuro Rehab
to provide stakeholders with tools to aid them in
commissioning high quality neuro rehab services
which was very well received.
The SCN has engaged all the CCGs within the
East of England and has established a region
wide advisory group which develop and oversee
the work of the SCN. The group consists of
commissioners (CCG, local authority and
specialised), General Practitioners, Neurologists,
Rehabilitation Consultants, Specialist Nurses,
voluntary organisations and patients. We would
encourage new members to come forward
to help us improve the care of people with a
neurological condition across the region.
Greater Manchester
Adam Zermansky - Consultant Neurologist
at Greater Manchester Neuroscience Centre.
Julie Rigby - Network Manager with the
Greater Manchester, Lancashire & South
Cumbria SCN.
E: [email protected]
Improving the management of headache
in primary care
The current model for neurology services is
primarily based around out-patient clinics and
for the past two years all neurologist services
delivered by specialist centres have been
commissioned by NHS England. NHS England
has highlighted a significant increase in neurology
referrals over the past 8 months leading the
organisation to embark on a QIPP initiative to
drive improvement and efficiencies in this area
of care.
Specialised service recommendations to ministers
NEURODIGEST • ISSUE 2 • 2015 • 21
Neurology Networks
indicate that only 25% of neurology activity
is initiated by Consultant-to-Consultant
referrals. The remaining activity is initiated
from Emergency Departments (EDs) and by GP
referrals with up to 33% of patients seeing their
GP five or more times about health problems
caused by a neurological condition before being
referred to a neurological specialist. These
data have supported the decision to remove
neurology out-patient activity from the service
description for adult specialist neurosciences
services with the commissioning responsibility
for non-specialist neurology to migrate back to
CCGs during 2015/16.
Since approximately 25% of referrals to
secondary care neurology services are for
patients with headache, the Greater Manchester,
Lancashire and South Cumbria Strategic Clinical
Network (SCN) has refreshed previous work
piloted in Salford and shared across Greater
Manchester in the spring of 2012. This is an
updated algorithm to support GPs in the
management of headache in primary care,
avoiding unnecessary referrals to secondary care.
The algorithm is attuned to the NICE guidelines
(CG150) published in September 2012 and the
APPG review of headache published in 2014.
The algorithm has been refreshed by a group
led by Dr Adam Zermansky from Salford Royal
NHS FT with support from GPs and Consultant
Neurologists from around the region, including
• Dr Raza Ansari - GPwSI, Lancashire
• Dr Steven Elliot – GPwSI
, Greater Manchester
• Dr Hedley Emsley – LTH
• Dr Partha Ganguli – GPwSI, Lancashire
• Siobhan Jones - Specialist Nurse, SRFT
• Dr Jitka Vanderpol - Cumbria Partnership
Trust
The next steps for this project are:
1. To get comments from GPs across the
footprint
about
the
feasibility
of
implementation, any specific training needs
and highlighting any cost implications for
commissioners or providers. Training options
could include:
a)Educational roadshows approved for
CPD by the RCGP providing an
opportunity to explain the detail within
the guidelines and its role as a tool for
diagnosis and management.
b)Educational videos
c)Power-point shared across the patch
2. Agree measures of success, potentially: GP
satisfaction; patient satisfaction; reduction in
referrals to secondary care; decrease in
number of rejections at triage.
In addition to supporting GPs to manage
headaches better in primary care, CCGs are
being asked to consider other options which
could improve service delivery:
• Creating a cluster of GP’s with an interest
in headache e.g. a Headache Club, who are
given more time per patient to see headache
referrals from local practices
• Identifying GPs from clusters who would
like to gain GPwSI accreditation and act as
the hub for GP clusters
• Ensuring links with secondary care neurology
to support ongoing CPD, including decision
support
• Identifying ESP nurses or physiotherapists
who could support the management of
headache through e.g. delivery of botulinum
22 • NEURODIGEST • ISSUE 2 • 2015
•
toxin injections, improving posture and
mobility of the neck, acupuncture,
mindfulness programmes etc.
Fostering expert patient groups locally
to provide support to patients with chronic
migraine etc.
Finally Bernadette has been working with a
North Central London UCL Partner initiative
to address causes of emergency admittance
for MS – by far the major cause was UTI. The
learning from this will inform the NW London
programme.
Next steps for the SCN are to share the
guidelines via CCGs for sign-off through their
internal governance arrangements prior to the
guidelines, notes and survey being circulated to
GPs.
2. Shared learning – common neurological
conditions. Presented by Dr Bal Athwal, Royal
Free Hospital.
London
Michael Oates - Neuroscience Network
Manager
E: [email protected]
The Network held its annual stakeholder event
in March 2015 to present and discuss its work
programme covering April – March 2014 and
intentions for the future.
Dr David Bateman - National Clinical
Director for Neurology provided a national
picture. He summarised the national priorities
for services to address as local, integrated,
organised around the patient and accessible. He
highlighted the difficulties for district general
hospitals, specifically around outpatient access
and its case mix, access to acute care, and access
to long term care. Neurology was almost
absent and a poor relation to other conditions.
The presented data highlighted key areas for
development.
Most Neurologists were concentrated at
neuroscience/neurology centres; only 48% of
DGH sites had Neurologists based there and
only 13% of those had dedicated neurology
beds.
47% of neurology admissions were emergency
admissions but only 6.5% were under a
Neurologist. The cost of emergency admissions
was £975 million out of a £1.4 billion total
neurology spend.
Dr Bateman concluded with the opportunities
for neurology provided by the five year forward
view – multi speciality community provider,
primary and acute care systems redesign, urgent
and emergency care redesign and changes to
neurology commissioning.
The clinical leads for Network’s workstreams
presented their progress and future intentions.
1. Integrated care: 3 projects. Presented by
Bernadette Porter, UCLH.
A team has been working with NW London
integrated care programme to pilot a neurological
condition - multiple sclerosis (MS). The pilot
involves anticipatory care planning by the GP
and patient, self-help and case conference by
a multi-disciplinary team for complex patients.
Educational tools are being developed to support
the use of the pathway. Parkinson’s and epilepsy
conditions will be added this year.The MS pilot is
in Harrow, and 8 GP practices are involved with
the care plan available on NHS 111.The self-help
element uses a self-test to exclude a urinary
tract infection (UTI) with antibiotics available if
positive. We are also looking at the benefits of
a neurological specialist attending a social care
neurology multi-disciplinary team at Enfield –
findings and case studies will be published soon.
The project team identified three common
conditions that could be mainly managed in
primary care: headache, dizzy spells and transient
loss of consciousness (TLC). To support GPs a
headache pathway with linked short films at key
decision points has been produced. The pilot
in Kingston and Barnet CCG is reviewing the
educational product which can in its entirety
be used as a headache educational tool or be
accessed for a specific topic to confirm or
support a decision. Dizzy spells and TLC will
be developed this year. In addition the team
has provided input into a headache referral
management QIPP (Quality, Innovation,
Productivity and Prevention).
3. Acute neurology. Presented by Dr Nick
Losseff, Clinical Director of the network.
“There are twelve
Strategic Clinical
Networks (SCNs) and
their role is to encourage
collaborative working
across the boundaries
of commissioning and
provision, where a whole
system, integrated approach
is required.”
Acute neurology is the major new workstream
this year. It arose out of a neurology
organisational audit (Quality & safety
workstream) of neuroscience/neurology centres
and district general hospitals. It found that no
hospital in London had a systematic approach
for the emergency admission of patients with
neurologic conditions directly under the care
of a Neurologist. The programme will cover
acute neurology standards, acute models and
evaluation. Seven trusts have expressed interest
in taking part.
4. Borough Based teams (BBTs). Presented
by Dr Jenny Vaughan, Ealing Hospital.
One of the roles of the network is to advise
commissioners on the development of
neurological services. BBTs are our approach
to engage with CCGs raising local needs and
solutions. Each borough has an identified clinical
lead, community rehabilitation lead, and a
representative from the third sector.
Available for participants to view were the
neurological data profiles for London and each
London CCG and the London neurological
website – neuro-signpost.
Links to additional information:
Organisational audit: http://www.londonscn.nhs.
Neurology Networks
uk/publication/london-neuro-quality-and-safetyorganisational-audit/
Headache educational tool: http://www.londonscn.
nhs.uk/publication/london-agreed-headachepathway-and-podcasts/
London & CCG neurological profiles: http://www.
londonscn.nhs.uk/publication/london-neurologyprofiles-by-ccg/
Acute neurology case for change: http://www.
londonscn.nhs.uk/publication/acute-neurology-inlondon-the-case-for-change/
Update on our workstreams: http://www.
londonscn.nhs.uk/publication/london-neurosciencescn-strategy-update/
Website: http://www.myhealth.london.nhs.uk/yourhealth/neurological-conditions-signpost
Thames Valley
Eva Morgan - Quality Improvement Lead
for Mental Health, Dementia and Neurological
Conditions from April 2013-April 2015.
In 2013, to help develop their work plan, the
Thames Valley Mental Health, Dementia and
Neurology Network (MHDN) commissioned
the Neurological Commissioning Support
(NCS) to assess the state of play of neurology
in the Thames Valley and identify any gaps and
variances in service provision.
Based on the evidence provided by the NCS
report and illustrated by the various reports
and work undertaken on headaches, the MHDN
network proposed a new model for adoption
by the CCGs to improve neurological services
within Thames Valley, improve patient experience
and reduce overall costs to the system. The
vision for Thames Valley is to empower patients
and GPs such that common neurological
problems are expertly self-managed, based on
the “House of Care” model; that services, where
appropriate, are managed in the community and
boundaries between primary and secondary
care are abolished; that apps are developed and
used by both patients and clinicians to manage
GPwSI Pilot
•
72 referrals were triaged to BK. Two
patients (3%) declined to be seen by
a GPwSI (one of whom was himself a
GP), 5 (7%) cancelled, 8 (11%)
DNA’d, leaving 56 (78%) patients seen.
•
Cost savings: There was a 33% saving
in costs per head in the pilot clinic vs.
NHS reference costs for a Neurology OPA
(£141 vs. £209).
• Only 26.8% required an MRI (vs. two
thirds of headache pts in the JR OPD1).
• 73.5% were discharged after consultation
(vs. 60% in the JR OP1).
•
There was a near 75% increase in the
number of patients who felt able to
manage their headache after the consult
(15% pre-consult vs. 84.9% post consult).
Clinical and patient benefits for the GPwSI pilot
their condition and integrated pathways are
delivered so that care is seamless and based on
patient need.
To develop this vision we undertook a number
of pilot studies; these included a pilot for
developing a GPwSI service in the community
and a patient experience survey to understand
what blockages exist; Underpinning this work
we held our first Thames Valley wide Neurology
Strategic Forum with multi-agency stakeholder
representation including, CCGs, GPs, Social
Care and service users, to provide the strategic
direction for the network in 2015/16.
So what have been the outcomes for these
specific elements of work?
• Good engagement with CCGs across
Thames Valley with all CCGs now having
appointed a GP Lead for Neurology or having
set up a small but significant neurology
review within the planned board programmes
of work
• Development of a Parkinson’s pathway with
Berkshire East and development of a
Neurology Strategy with Berkshire West
• Excellent participation in the strategy forum
with four key areas identified for further
work;
- Developing patient centred care based
on the “House of Care” model to enable
self-management
- Clinical information for patients and
clinician to understand their condition
- Reducing emergency admissions
- Delivering integrated pathways.
Yorkshire & the Humber
(Y&H)
Colin Sloane - Quality Improvement Lead
David Broomhead - Consultant
Physiotherapist
working
for
Northern
Lincolnshire and Goole NHS Foundation Trust.
E: [email protected]
The current
includes:
SCN
Neurology
team
Dr Helen Ford, Consultant Neurologist at Leeds
Teaching Hospitals and joint SCN Clinical Lead;
David Broomhead, Consultant Physiotherapist
at Goole Hospitals and joint Clinical Lead;
Alison Bagnall, SCN Manager for Mental Health,
Dementia & Neurology; Sherry McKiniry, SCN
Quality Improvement Manager; Colin Sloane,
SCN Quality Improvement Lead.
The Y&H SCN have prioritised the
following projects for Improvement:
A) Epilepsy management in primary and
secondary care
B) Headache management in primary and
secondary care
• Mapping out of headache services
• Headache management audit in the
Emergency Dept
C) Neuro-rehabilitation,
•Current service
•Mapping out to identify gaps and
concerns
•Working with NHSE and other stakeholders
to formulate a long term plan which aims
to improve access to neuro-rehabilitation
within acute and community settings.
D) Defined Neuromuscular pathways.
E) In conjunction with national leaders and
SCNs define neurological service standards.
SCN Neurology Groups
The SCN has had a successful year engaging
with clinicians to understand current service
delivery processes and barriers to promoting
improvements. A number of clinical groups have
been established to facilitate a) information
sharing both locally and nationally b) identify
service gaps c) disseminate good practice d)
develop improved pathways of care e) interpret
the data from the Neurology Intelligence
Network (NIN).
One group instrumental in facilitating service
improvement is the Neurology Clinical Expert
Group (CEG) chaired by Dr Ford. The aim of
this group is to identify areas of good clinical
practice, particularly acute presentation and
the longer term management of neurological
conditions and to facilitate a regional approach
to service delivery.
Access to neuro-rehabilitation is vital to
promoting better outcomes for patients;
currently neuro-rehab in the Y&H is being
investigated. Some neuro rehabilitation services,
other than stroke appear to have evolved from
clinical interest and patient need rather than
as a result of direct commissioning. The SCN
is working closely with rehab experts, NHS
England and CCGs to identify what good neurorehab should look like and hopes to develop
service models in the future. David Broomhead
chairs the neuro-rehab steering group which
held its inaugural meeting in July 2014 and meets
quarterly.
Access to neurorehabilitation is vital
to promoting better
outcomes for patients.
In partnership with clinical leads from the
area the SCN has developed a neuromuscular
disease pathway, which has been adopted by the
NMD campaign and distributed for comment
nationally. Access to the pathway can be found
at
http://www.yhscn.nhs.uk/mental-health-clinic/
neurology-network/work-priorities/Neuro-MuscularDisease.php
Helped in part by NHS England’s repatriation of
specialised outpatient clinics back to CCGs, the
Y&H SCN has been fortunate to secure support
from commissioning leaders across the three
consortia (North Yorkshire & Humber, West &
SouthYorkshire). One challenge is that neurology
can struggle to attract attention against all the
other commissioning priorities such as cancer,
stroke and urgent and emergency care.
The SCN held a Neurology commissioning
workshop on 13th Nov 2014, which resulted
in delegates agreeing the need for an SCN
Neurology Commissioning Group. The first
commissioning meeting will be held in Spring
2015. This signifies a positive step towards
improving neurology services in Y&H through a
more formal commissioning structure.
NEURODIGEST • ISSUE 2 • 2015 • 23
SERVICE DEVELOPMENT
24 • NEURODIGEST • ISSUE 2 • 2015