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6 monthly e-newsletter
Issue 3 – October 2015
OPTCARE Neuro aims to determine the effectiveness and cost-effectiveness of Short term Integrated Palliative care
(SIPC) for people severely affected by Long-term neurological conditions (Multiple Sclerosis, Parkinsonism and related
disorders, and Motor Neurone Disease). See our webpage for more information: tinyurl.com/optcareneuro
Cardiff site now open for recruitment with Brighton and
Hove to follow in November!
On 7th July, OPTCARE Neuro opened for recruitment at our
Cardiff site, led by Site Principal Investigator Dr Anthony Byrne.
With Cardiff now open, 4 sites are now recruiting for the study,
with Brighton and Hove due to open as a 5th in November this
year.
Committee meetings
Our Study Steering Committee (SSC) and Data Monitoring and
Ethics Committee (DMEC) have both had meetings via
teleconference to ensure the project is running smoothly. Dr
David Oliver, a member of the DMEC, has spoken of his
support of the study;
“This is a very important study and there is a real need to have
evidence for the effectiveness of palliative care for
neurological patients. The European Association for Palliative
Care Taskforce has been looking at this area and we have been
struck by the lack of good evidence and I do hope that all
involved will continue to recruit and support the study”.
The OPTCARE Neuro PPI Committee have also met, and
provided the study team with their advice on aspects of the
study from the perspectives of those who have first-hand
experience of living with Long term Neurological Conditions.
In the media:
On 24th July, King’s College Hospital issued a press release on
OPTCARE Neuro as a first in the world study!
Our Nottingham team have been busy publicising the study,
with a piece in the Nottingham post on 31st August, and an
interview with site PI Dr Vincent Crosby on BBC Radio
Nottingham on 2nd September.
RECRUITMENT UPDATE
OPTCARE Neuro is aiming to recruit 356 patients to the study
across at least 5 sites around the UK by the end of 2016. The
graph shows progress to date at each of our sites currently
open. Congratulations to the teams at each site who have
recruited their first patient, especially both the King’s College
London team, who are currently in the lead, and the
Nottingham team, following closely behind!
Being a part of OPTCARE Neuro
“Despite having been diagnosed with Parkinson’s nearly 10
years ago and participating in many research projects over this
period, I am only now beginning to appreciate fully the wide
range of symptoms that may be suffered by people with the
disease and the severe impact that these may have on quality of
life. Most people are unaware of the wide scope of potential
non-motor symptoms ranging from loss of sense of smell to
constipation, sleep problems, depression, anxiety and significant
cognitive impairment. While each Parkinson’s patient will
display a unique combination of motor and non-motor
symptoms there will be an increasing need as the disease
progresses, to treat these collectively to maintain the best
quality of life possible.
As such a Parkinson’s patient, I welcome the OPTCARE Neuro
study as it will promote need to take a holistic approach to
treating the range of symptoms suffered by people with
Parkinson’s and other neurological diseases. I also believe that
the study has the potential to identify how these treatments can
be integrated even over a comparatively short period to
maximise their benefits to patients.
I believe that it is vital that those patients with progressive and
(so far) incurable neurological conditions such as Parkinson’s
fight the progression of their disease. Taking part in research
studies such as OPTCARE Neuro is one way of doing this.
In addition, I am aware that most of the medications used to
treat me have only been approved after research and trials on
other patients. I think it only fair, therefore that I too volunteer
to participate in research projects”.
David Charlton
PPI Committee Member - Parkinson’s Patient Representative
OPTCARE Neuro in Nottingham
Patients in Nottingham will be identified by the specialist
neurology and rehabilitation teams working in close
collaboration with the research team at Nottingham
University Hospitals NHS Trust. This ensures that eligible
patients are offered the opportunity to take part in this
important research. Once randomised into the study,
patients are contacted and seen by the specialist palliative
care team to complete the intervention in the most
appropriate setting. So far, most patients have chosen to be
seen at home, but some have preferred to be seen at
Hayward House, the specialist palliative care unit in the
grounds of the Nottingham City Hospital campus.
Andrew Dodsworth, the first patient in Nottingham to be
recruited into the study, said: "I had no hesitation in taking
part. To potentially help people further down the line is a
big motivation.”
"If someone else can offer you their expertise and support,
and to be able to give them a ring if you need help, that's
only a good thing."
Dr Vincent Crosby
Nottingham Site Principal Investigator
and Co-applicant
Andrew’s wife commented that “introduction to the
palliative care team although early in the disease process
has been of psychological benefit. It has been reassuring to
know that services are available as the disease progresses
and that we are familiar with the team.”
Sarah Freer lead Nurse for the specialist palliative care team
said “the palliative care nurses have relished the
opportunity to be involved in this ground-breaking
research.”
Above: The Nottingham Research Team.
Top, left to right: Asmah Hussain, Dr Andrew Wilcock, Sarah
Farnan.
Bottom, left to right: Dr Sarah Awan, Cathann Manderson
Above: Three of the Nottingham Palliative Care Nurses
involved in delivering the trial intervention. Left to right Roz
Bexon, Alison Freemantle and Claire Hall
SAVE THE DATE: Wednesday 4th May 2016
The Cicely Saunders Institute Conference 2016 – Palliative care for those with Long Term Neurological Conditions
If you have any queries regarding any of the information in this newsletter, please do not hesitate
to contact us via:
Email: [email protected], Tel: 020 7848 5578, Fax: 020 7848 5517
This study is funded by the National Institute for Health Research HS & DR programme (Ref No. 12/130/47)
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