Download community insight report - patient centred care

COMMUNITY INSIGHT
REPORT – PATIENT
CENTRED CARE
October 2014
1
1.
INTRODUCTION ......................................................................................................... 3
2.
BACKGROUND TO ORTHODOX JEWISH COMMUNITY IN STAMFORD HILL ................... 3
3. METHODOLOGY ............................................................................................................ 4
4.
VOICES OF PATIENTS, CARERS AND PROVIDERS ......................................................... 5
5.
THE NEED FOR SINGLE CONTRACTS FOR PARTICULAR SERVICES ............................... 14
6.
EMERGING CROSS CUTTING THEMES & RECOMMENDATIONS .................................. 14
7.
RECOMMENDATIONS FOR INDIVIDUAL PROVIDERS ................................................. 18
8.
GOOD PRACTICE EXAMPLES ..................................................................................... 19
9.
IN CONCLUSION ....................................................................................................... 20
2
COMMUNITY INSIGHT REPORT - PATIENT CENTRED CARE
1. INTRODUCTION
The Interlink Foundation (Interlink) was awarded a Community Insight grant through Healthwatch Hackney,
under the Fund for Health, to carry out research and collate patient feedback from patients and providers of
services in the Orthodox Jewish (Charedi) community. We expect this insight to have relevance to patients of
any background.
Interlink has a membership of Charedi led and run organisations. Services to members include consultancy,
training, information, advocating for Charedi needs and cross sector partnerships. Members work with a wide
range of vulnerable groups on a daily basis and to access Charedi service patients in an unparalleled way. This
report documents the main findings and themes, which Interlink, together with some of these front-line
organisations have gathered and analysed over the last few months.
The main groups targeted were people with mental health problems and people with age related conditions
such as dementia, but not excluding other long term conditions.
We worked alongside member organisations to gather information, views and evidence from patients, carers,
support workers and volunteers. We have also used information gathered from Interlink Strategy Group 1
discussions where this was relevant.
We hope this report will provide valuable insight and the impetus for greater engagement with
communities on issues that concern local people.
This report is not intended to provide a statistically robust in-depth analysis of community needs and concerns,
and does not replace the need for a full community needs assessment where this is relevant.
2. BACKGROUND TO ORTHODOX JEWISH COMMUNITY IN STAMFORD HILL
Hackney has a highly diverse community from a range of cultural and ethnic backgrounds. Distinctive
among these is the Orthodox Jewish – or Charedi - community concentrated in Stamford Hill in the
north of the borough. While the origins of this community in the area go back to the 18th century, it
is primarily made up of Holocaust refugees who arrived in the 1930’s and ‘40’s, and their
descendants.
1
3
Committee or working group made up of Charedi organisations and statutory providers/commissioners
The Charedi Community is growing at a rapid rate – about 4% annually2 - and within a defined
geographic area in Hackney. This growth is fuelled by a high birth rate. This suggests a population
increase in Stamford Hill from the current estimated 19,7813 (7.4% of the Hackney population) to
26,000 by 2019. Households in the Charedi community are significantly larger than average, at 6.3
persons per household4 compared to a Hackney average of 2.3 persons per household. Over half the
population is aged under 205, representing a very significant proportion of children in Hackney.
Charedi people are marked by their strict adherence to Orthodox Jewish practice and their unique culture
including dress, language and social codes. This community is unique in the extent to which it is self-organised;
Charedi community infrastructure encompasses synagogues, schools, community organisations and media.
These characteristics mean that Charedi people are much less likely to participate in conventional methods of
consultation or respond to communications designed for the general public, making them a ‘hard to reach’
group.
The rationale for this targeted piece of work carried out by Interlink was to gain insight and perspective from
the Charedi community on its experience of existing healthcare provision. This is unlikely to have been
included in any level of detail from other patient experience gathering mechanisms.
3. METHODOLOGY
Our insight is compiled from four main sources:

Interviews with community providers, who through their experiences and day-to-day
contact with clients have valuable insight.

Questionnaires completed by members of the Charedi community.

Insights collected from notes of community meetings held by Interlink over the last two
years. We reviewed notes from the Adult Services Forums in Hackney that Interlink
convenes. These Forums provide a space where people can raise issues confidentially. They
are well attended and here information is exchanged, problems raised and solutions
explored, and they offer a rich source of community insight. We have captured key themes
and concerns, rather than highlighting individual contributions.
2
Populations Trends among Britain’s Strictly Orthodox Jews, Vulkan and Graham 2008
In 2011, according to Mayhew, the number was 17,587. Allowing for 4% growth per annum, by the end of
2014, this will be the projected size of the population.
4
Estimating and Profiling Hackney’s Population, Mayhew Associates Ltd 2008
5
Counting Hackney’s Population Using Administrative Data – Mayhew, Harper and Waples 2011
3
4

Insights collected by Interlink member organisations that have access to people in groupbased settings, such as peer support groups or day centres. Using the cascade approach, our
members have conducted a dialogue with their participants to gather insight, which we have
incorporated into our findings.
4. VOICES OF PATIENTS, CARERS AND PROVIDERS
4.1 GENERAL COMMENT
Interlink approached this piece of work in an open-minded way, without preconceived notions about
what would emerge.
We were surprised, and disappointed, at the extent of negativity we
encountered, particularly around people’s experience of social care. There were some reports of
good experiences, as well as services and experiences that were described as excellent. But overall
we found the experience of collecting and reporting this feedback a difficult one.
Our hope is that this insight into the experiences that patients have reported will lead to learning
and change within the health and social care sector.
Responses have been grouped into themes and come from providers and individuals. Some
comments are quite general, so will be difficult to respond to. Others are very specific. Whilst many
issues are service specific, some cut across several services. Where a particular patient experience is
included, this is shown in bold italics.
4.2 ADULT SOCIAL CARE

The quality of social workers at the Homerton University Hospital is high.

Median Road Rehabilitation Unit is an excellent facility, both at rehabilitating patients and advocating
for and ensuring that their needs are fully met, despite budgetary constraints.

Provider experiences with Adult Social Care have been varied. Patients, carers and providers do not
have a consistent experience, which will depend on the individual social worker.

‘Out of panel’ decisions are an effective way of responding swiftly and flexibly to patients’ need. But
not all social workers are aware that they are an option.

Once a patient is in the social care system, the service is good, but entering the system is problematic.
The referral process has been described as “Protracted, awkward and lots of hoops to jump through.”

There is a 28 day target for assessment and outcome, with urgent cases fast tracked. The decision that
a case is urgent is only decided on the basis of a visit. In practice, this target is not met and many
patients face extensive waits before accessing any support.
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
A number of problems were identified with assessments.
o
Assessments are sometimes inaccurate, incomplete, unsigned or undated
o
Providers reported extensive worrying administrative problems such as Schedules of Support
Plans listing deceased patients, but not listing patients with short-term support packages.
Providers do not rely on current schedules for any functions because they are so inaccurate.
o
Incorrect bills may be sent to families causing unnecessary distress, particularly to the elderly.
(Fairer Charging)

Transferring from one care provider to another has been very challenging.

There have been issues with Adult Social Care when set up from hospital, particularly out of borough,
as social workers no longer attend out of borough hospitals. They should visit at home the day after
discharge. In practice, this does not necessarily happen.

There are delayed discharges because there is no care in place, which highlights inefficiencies in
processes and assessments.

Patients have been discharged home without any care package in place for extended periods. This may
be an outcome of asking patients at the weekend if they can manage until after the weekend, when
the social worker will come, and then they fail to come within a reasonable timeframe, leaving a gap in
provision.

Adult Social Care allocations are unrealistic and fail to take into account patients’ basic care needs. Half
hour visits are being awarded for multiple tasks in the task box, which a fit and healthy person could
not realistically complete in that time. One provider has commented, “This makes a mockery of the
CQC requirement of maintaining independence.”

In many instances, family members have been required to undertake tasks they have had no training
to do and feel this is not respecting privacy and dignity of the patient.

Incontinent patients get a maximum of four visits per day, which may not necessarily match the
patient’s needs.

Some patients have been persuaded to accept Direct Payments, without having the implications
explained to them. It is an option for those who have time and energy. It requires a separate bank
account and each expense must be supported by an invoice. This will not work for the elderly or
confused.

There have been experiences where patients’ conditions have deteriorated and social worker may visit
as part of reassessment. Cases may be dismissed on basis of patient responding that they are happy.
They mean happy with the quality of care/carers, social worker interpreted this as happy with the
package and not requiring more support.

In the case of degenerative diseases such as multiple sclerosis or motor neurone disease where the
patient may be stable for some considerable time, sudden deterioration requires a system for fasttracking reassessments and out of panel decisions.
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4.3 REABLEMENT

Many social workers are unaware that assessments post hospital discharges do not need to wait for a
panel. One can get an out of panel authorisation for reablement.

Patients are provided with reablement packages from the First Response team. Bikur Cholim is an
approved provider for reablement. Social workers do not always know this. Charedi patients usually
prefer Charedi provision which meets their needs better, and will often refuse First Response with no
alternative being offered.

First Response carers are inconsistent at time-keeping and care workers often arrive late and there is
a high turnover of staff at a time when patients need continuity of care.

Reablement packages are typically awarded for six weeks. Patients should be reassessed after four
weeks, so that if there is a need to continue beyond the six weeks there should be no gap. This rarely
happens, except in the very few cases where the social worker is meticulous.

Where there has not been a reassessment and the patient requires further help, one can request an
out of panel authorisation, which not all social workers may be aware of.

Some patients may be able to manage with shorter reablement packages. If the situation was
improved and there was more confidence in timely reassessments and extensions when needed,
patients would be reassured to accept shorter packages.

Whilst personal care needs may be met, there is not usually consideration of emotional wellbeing
such as an allowance for help with going outside of the house.
4.4 CONTINUING CARE

Continuing Care has responded rapidly and efficiently and shown sensitivity when terminally ill
patients were fast tracked.

First Response team has been excellent in providing equipment for mobility and personal needs at
short notice.

Patients who access Continuing Care whilst still in hospital, have a more expedient service.

Assessments in the community can be long and drawn out. Assessments from private hospitals may
also fall into this category.

Fast track referrals from the community work better.

Transferring from Adult Social Care to Continuing Care may be challenging, and poor coordination
makes patients feel as if they are being felt pushed from pillar to post.

There are cases that fall between Adult Social Care and Continuing Care. These patients may have high
level non-nursing needs and are trapped between both bodies.
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
It appears that most issues relating to Continuing Care are to do with assessments. Once Continuing
Care has been awarded, the experience has been very positive in the case of increased needs,
reassessment or authorisation.


There are variations in individual experiences of continuing care, eg. “Patient’s serious condition was
acknowledged and once Continuing Care was awarded it was backdated.” By contrast, another patient
has commented, “Despite ongoing negotiations, continuing care was only paid from the date of
finalising all the details.”
Continuing Care does not give enough care, especially when patient requires 24 hour care. They may
give three nights out of seven. For high dependency patients, they may insist that patient goes into
residential care.

Very recently, there has been a trend for Continuing Care to negotiate prices downwards to unrealistic
levels with providers.
4.5 LEARNING DISABILITIES

Overall, patients and providers have found the process of assessments with the Learning Disability
Team very difficult. The term ‘horrendous’ was used by more than one person.

There has been smooth transfer from children to adult services for patients ‘in the system’.

There has been good interaction between the Charedi community and Powher, who provide advocacy
and information for the learning disabled.

The time lag between referrals, assessments and panel decision leaves the client in limbo. A six month
wait is standard.

When an assessment was completed but the social worker left her job before approval, families had
to go through the entire process again, which is not only a waste of time but also emotionally draining
as families have to repeat their story to different people.

The Learning Disability Team Co-ordinator in Hackney, who has now left, was very good.

There is a huge staff turnover with little continuity of care.

Cultural training about working with the Charedi community has been offered, but has not been taken
up.

Cuts to community services for the learning disabled often means that clients below the threshold do
not have their care needs met. Targeted Preventive Services fails to make a real difference. It offers
talking and signposting when these people need practical hours of care.

Cuts to organisations for programmes such as “Supporting People”, has necessitated cutting back on
highly successful therapies such as speech therapy or psychiatric therapy for the learning disabled.
This has a significant impact on the quality of life of the learning disabled.

There should be less emphasis on paper work and bureaucracy and more money to support activities
for people with learning disabilities and mental health issues.
8

Under FACS (Fair Access to Care), where person falls below the threshold, their care needs may not be
met. When a budget is awarded, the patient/carer needs to work out how many hours or services it
will buy. Patients and carers report that while personalisation should be about care being personcentred it just feels like another money saving exercise. If the family will do the personal care to allow
funding to be used for other areas, this will trigger a reassessment as the physical needs may be less
substantial. Money can be used for what the learning disabled person wants, but it is closely
monitored and money withdrawn if someone else does the care.

There needs to be better communication and joined up working between teams such as Physical and
Learning Disability, Mental Health and/or Elderly which will result in a more efficient and quicker
service to the individual, who may fit into several/many categories.

In situations where the parent of a learning disabled person is ageing this has not been acknowledged
and there are unrealistic expectations of parents as they develop their own medical issues.

Some parents are learning disabled. The fact that parents may be incapable is not taken into account.

In the interests of the learning disabled patients being fully involved in their care and decisions,
unrealistic decisions are taken around their care.

Six weeks of care can be awarded to encourage independence. This is totally unrealistic.

Funding community providers to deliver culturally appropriate activities will better match the needs
of Charedi learning disabled people. More resources should be made available for successful models
to expand and accommodate greater numbers and more sessions. Many mainstream activities are not
accessible for Charedi patients and carers because of their faith and cultural differences.
4.6 MENTAL HEALTH

Provider experience of the EQUIP (Early & Quick Intervention in Psychosis) model is excellent. (See
Good Practice Examples in Recommendations section of this report.)

Gardner Ward in the Homerton University Hospital tries hard, has had good outcomes and is happy to
engage.

Connelly Ward in the Homerton University Hospital could have more activities.

High standard medical care on mental health wards falls down on poor communication between
clinicians, nursing staff and patients, particularly in cases where people have physical health issues
which need addressing whilst in hospital.

A supportive, helpful and sensitive care worker makes all the difference to patients with mental health
issues.

Care co-ordinators are quite good at communicating with the team to which patients are discharged,
eg Anita House/community services and with the GP’s.

People with mental health issues, often face waits to access therapy services. Wait times for long term
therapy services are excessive averaging 10 months.
9

Activities on mental health wards are often not consistent with Charedi norms, for example activities
not allowed on Jewish Sabbath and festivals.

Incompatibility of IT systems and lack of communication between different providers presents a
challenge, e.g. patients attending several hospitals, doctors may not be able to access full medical
records.

Cognitive Behaviour Therapy helps mild to moderate patients. It is quick and cheap and adjusts
people’s way of thinking. It is hard to access. There also needs to be provision for psychotherapy
where this is not enough.

Follow on pathway is required for people who do not do well on IAPT.

There may be particular cultural barriers to Group Therapy for Charedi patients. There is still a lot of
work required around stigma.

An individual found “cancelled CPA’s at the last minute and extensive wait for rescheduling”
challenging.

There is too much discussion about problems, and too few resulting actions. Allocation of help for
mental health patients was not well targeted.

Permanent time lag from when referrals are made to social care, until assessments are carried out and
care package is awarded. This process takes months.

No orientation is given to patients on the mental health ward. Even if patients do not look like they
would understand, or have other impairments, they need proper orientation, verbal or written.
Patients, carers and families need inducting on the wards. The service can feel very impersonal.

Individual experiences of nurses in Mental Health often points to a rough or indifferent manner.
Visitors/advocates often ignored when raising serious concerns.

Where patients’ representatives or advocates have directed concerns to Modern Matrons, they have
taken these seriously.

Where staff are rough to patients, one can raise this and request a change. Behaviour can sometimes
indicate a need for customer care training.

Disconnect between departments and teams results in a lack of consistency and understanding.

Vulnerable patients would benefit from regular feedback conversations, which should include
target/goal setting and evaluating of achievements once they are over the acute crisis. There is
insufficient emphasis in engaging patients to participate in this process.

Mental Health patients would have significant feedback on user experiences if they would be
supported to do so.

Enhanced awareness of Charedi faith and culture by staff would benefit vulnerable patients.

Regular multi-disciplinary team meetings and updates of information with the mental health patient at
the centre would vastly improve their care.
10

Carers have raised serious concerns when the voice of a vulnerable patient, who lacks capacity, is given
precedence over carers’ views of what their needs are.

Mental Health patients need realistic Action Plans for Discharge. Patients feel discharged abruptly,
even when they have been prepared, they feel inadequate for discharge. Some need much more
reassuring to enable them to leave hospital with a degree of confidence.

Extensive arrangements are made for when mental health patients are given home leave. This is
inconsistent with the lack of discharge planning for family members upon discharge. Community
providers have stepped into the breach, offering support with positive outcomes.

Home Treatment Team experience was disastrous. Time-keeping is poor, which means medication is
irregular, with real possibility of developing into crises. Team is not prepared to listen to the views of
people around the patient.

Home Treatment Team felt like they had a monitoring role, not a treatment role.

Although there is good and ongoing communication between clinicians and nursing staff,
communication between nurses and patients is poor. This leads patients and their relatives to perceive
that “nothing is being done for them”.

Hospital based support for carers fails to meet the needs of Charedi patients. At Homerton, this
patient group has failed to access any activities.

A schizophrenic patient who has no family, and is in remission after treatment for cancer, has had a
care package for personal care refused by panel on the grounds that he can pay for his personal
hygiene out of his lower rate disability allowance of £21 per week. This was described as ‘cruelty’.

An 18 year old mental health patient, living in supported accommodation was behaving suicidal. A
request was made to pay for 1:1 support to manage her. This was refused. As a result, she was then
admitted to Homerton, where she was given 1:1 support. She was then transferred to a unit in
Southend and from there to another unit. Finally she is back in her supported accommodation. Care
co-ordinator has articulated that they had the reasonable request for 1:1 not been refused in the first
place, there could have been a better outcome.

4.7 DEMENTIA AND LONG TERM CONDITIONS

Dementia adviser was extremely helpful and offered useful advice at the Dementia Care Services in
Felstead Street and in arranged venue.

We had an excellent Speech therapist who was understanding, helpful, respectful, and always
available to advise on the telephone and visited regularly.

Occupational Therapy has responded rapidly and efficiently and shown sensitivity to patients’ needs.

OT and Telecare have improved very much.

The Dementia Care Team worked in a very joined up way and always enquired about any other
services required, eg the Speech Therapist could ask about nutrition and refer to dietetics.
11

“Community club for dementia sufferers, facilitated by Bikur Cholim, is an excellent resource. Would
benefit from more such services.” (service patient).

There is a need for more support in managing long term conditions in the community, eg diabetes.

Dementia sufferers with complex needs experience wide variance in provision. Performance of
individual clinician/therapist, colours the experience with a range from poor to excellent.

Support from dementia champion linked with GP practice was temperamental.

Experience of the District Nursing team varies between good and appalling with poor communication.
Typical examples cited are failing to turn up, not changing dressings, refusing to follow GP’s
instructions, doing their own things instead of following hospital instructions, taking ‘forever’ to come
to do blood tests, unreliable in attending booked routine visits, unco-operative or hostile and only a
small handful amongst the team performing in a professional, caring and courteous manner. This puts
additional challenges into managing patients’ long term conditions.

One patient reported that the hospital geriatrician lacked sensitivity and compassion and failed to
meet patient’s care needs in a timely manner.

There is discrepancy/inconsistency in the approach of social workers. Visits and follow up are ad hoc.
Experience of service varied according to individual practitioner.

Social workers carrying out assessments or reassessments of patients, either need to listen to family
members as well, or will need to visit several times in the case of able bodied patients with dementia
who present very coherently giving a false impression.

Patients need easier access to GP for complex, but not necessarily urgent needs.

When therapists have been well matched to patient, the engagement and quality of care has been
excellent.

Turnover of clinicians presents a particular challenge to people with dementia and other long term
conditions.

Allocating a key worker, responsible for the patient’s best interest would be very helpful in providing
continuity of care.

When a patient lacks mental capacity and there is no “Power of Attorney” in place, there are particular
challenges in making discharge arrangements because hospital will not easily speak to their advocates
because of data protection or patient privacy.

A patient has commented, “My GP and North London Bikur Cholim have been immensely
supportive.”

Patient’s 24 hour care needs are not met.

Older patients are sometimes put on nil by mouth for questionable reasons. If there are aspiration
risks these can be investigated in a timely manner rather than ‘starving’ the patient. A patient with
reduced mental capacity will not even realise what is happening and without someone advocating for
12
their needs in a busy unit, could die of dehydration. The instruction nil by mouth is instantly obeyed.
The perception is that the swallow test may not be pursued with the same rigour.

An elderly patient from a care home has been the victim of multiple failings in the case of fractured
wedges in her vertebrae. Her GP sent her to Homerton University Hospital for an Xray. She was sent
home without any information or recommendations, in excruciating pain. Her GP doubled her dose
of Co-codamol which gave her terrible constipation. All the while she was screaming in agony. First
response was contacted three times. They responded after three messages. She was awarded three
half hour visits per day to take care of all her personal needs. A referral was made by the GP for a
hospital bed to the District Nursing team. The hospital bed was refused because they maintained
that while she was in an acute phase, she would get better. All efforts to care for her in the
community were met with resistance, both in terms of the size of the care package and the drugs not
being strong enough for good pain control. In the end, she had to be admitted to hospital.
4.8

GENERAL
St Joseph’s hospice gives excellent support for people with palliative care needs
and specialist support training for staff.

Resuscitation Unit at Homerton Hospital was marvellous.

Some of the feedback we have gathered suggests that patient experience is improving at Homerton
University Hospital.

Personalisation has given flexibility in the timing of our care provision.

The Dental Service has been praised.

The incontinence team has been helpful in providing necessary aids, once referred. There are delays in
assessments and products are restricted and as a result, fail to meet needs of some patients.

It is a sad observation from several community providers that some vulnerable patients or those with
complex needs would die of neglect in their own homes if they did not have organisations, volunteers
or family advocating for them.

When a younger person is diagnosed with a terminal illness, they get a much better deal than an
older person, especially dementia patients who cannot advocate for themselves.

Managers and care co-ordinators in community organisations have commented that their roles feel
like “fighting and struggling for people’s needs without any feeling of partnership”. Whilst recognizing
budgetary constraints, they would appreciate partnership working to see how they could jointly best
meet the needs of the patient.


In instances of high levels of need, there is an expectation that patients with many relatives should
have these relatives committing to take on an extensive level of care. However, this understanding
fails to take into account that relatives may have their own heavy personal family commitments and
responsibilities and be unable to take such an active role. (eg they cannot be up at night caring and
then look after their own children all day the next day.)
When a patient has deteriorated and become less mobile, asking for a reassessment carries the risk of
a reduction in the existing package, as social services may decide that patient now requires less care!

13
Issues have been raised around hospital transport services for more vulnerable patients.

Lack of communication about access to vital services such as district nursing and what to do out of
hours.

The important issue of domestic cleaning help for sick patients in receipt of care packages is
completely neglected.
5. THE NEED FOR SINGLE CONTRACTS FOR PARTICULAR SERVICES
The need for specific contracts for services for Charedi users was a consistent theme in Adult Services Strategy
group meetings. The following points have been highlighted:

Mental Health –The Integrated MH Network will mean that provider organisations no longer have a
direct relationship with commissioners and this may result in a less flexible approach than had
previously been possible.

There is enormous concern that the Integrated MH Network has a significantly reduced capacity to
provide one to one therapy services which has been a vital community resource. There are significant
worries about the effects of this and that people from the Charedi community may try to avoid
accessing mainstream therapy services and only access when they reach crisis.

Advocacy Services – a very small advocacy service for accompanying vulnerable patients/articulating
their needs has just started with Bikur Cholim.

Day services for older people – there is low volume and underfunded community provision.
The Carer’s Contract is an example where the council has allowed a small group of providers rather than a
single contract.
6. EMERGING CROSS CUTTING THEMES & RECOMMENDATIONS
6.1 ASSESSMENTS
Many complaints regarding accessing the different services are centered on assessments and the time lag from
referral, to assessment, to care package award. There should be a tighter timeframe for referrals, assessments
and panel decisions. The current target of 28 days, for completing the process, is clearly not enforced. A
community provider for the learning disabled commented that clients “can typically wait between six and ten
months for an outcome.” Below are some of the recommendations which would go some way in alleviating
difficulties.

Improved communication between hospitals and social services, particularly out of borough hospitals.
There should be an option to leave messages and for staff to respond promptly. This issue comes up
14
with the learning disabled, patients with dementia, long term conditions and others, who may require
reablement or Adult Social Care.

The experiences of those waiting for assessments for Continuing Care have also been temperamental.
Processes should be audited so there is a consistent approach. An individual has commented that “the
assessment process for Continuing Care was gruelling, and the patient passed away several days after
the award was made.
There was no provision for backdating in spite of presenting to panel three
times.”

Patients applying for any care packages should be given support, rather than feeling that they have to
push to make any degree of progress.

For patients with high level non-nursing needs, Adult Social Care and Continuing Care should carry out
a joint assessment and agree a joint care package.

In cases of sudden deterioration of a patient with a debilitating disease, there should be a system for
fast-tracking reassessments and out of panel decisions.

Application process could be simplified.

Members of the administrative teams which underpin the assessment processes are often lacking
basic skills and competences. They should either be skilled up or redeployed.

Arrangements should be made for care to cover the period between referral and care plan award. By
default, it is up to family, relatives, neighbours, friends and community groups to step in the breach.
Not everyone has a wide circle of contacts, family or other support and inevitably, there may be
patients who may fall through the cracks and whose needs will not be met. This compromises
patients’ health and safety and may lead to deterioration in patients’ conditions.

Reablement services should be improved so that if a patient still requires assistance beyond six
weeks, this should happen without a gap. Patients who have reablement packages should be
reassessed after four weeks, but this seldom happens. An audit of cases would identify this failing.
Regular progress reports submitted by providers could also inform these decisions.

Where an application has been rejected the appeals process should be simplified. One provider was
aware of two cases that had gone to appeals and both were successful. Assessments should be
carried out with integrity and sensitivity to avoid the need to go through the appeals process. Where
patients lack the means to go through legal procedures, their care/quality of life may be seriously
compromised.

Assessments should be carried out with the patient’s needs coming before financial considerations so
that they receive adequate care. One patient has commented, “Access to Continuing Care needs to be
improved, rather than making it excruciatingly difficult to access.”
6.2 COMMUNICATION
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Communication issues commonly feature in patient satisfaction surveys. Good communication underpins
positive patient experiences. Issues have been identified in communication between services, communicating
with patients themselves, as well as communicating information about how services operate.

Improved communication between teams and different providers will give a more joined up and
expedient service to the individual. Issues also extend to IT compatibility; it would be helpful if
clinicians from different services would be able to access patients’ records.

Improve communication between departments and teams in hospital and community services for
more consistent approach and better understanding of the patient.

Improvements in communication with medical staff and nurses to patients, particularly on mental
health wards. This will help overcome the perception that nothing is being done for them.

Improved communication around services and expectations – taking the time to have these
discussions will avoid complaints and misunderstandings and help patients understand and navigate
services ultimately saving time and money. This should be part of any consultation with clinicians and
therapists, but there may also be a role here for social workers and dementia advisers.

Regular Multi-disciplinary Team meetings to update on the circumstances of the mental health
patient should be held with the patient at the centre. This will ensure effective communication with
and about the patient.
6.3 CULTURAL ISSUES
Many a difficult situation can be eased and worked through with a greater understanding of Charedi norms
and practices. Attending cultural awareness training offers a basic understanding of the Charedi way of life and
the importance of its customs, acting as an eye opener and giving real insight into Charedi lifestyle. There are
opportunities for attending presentations as well as cultural walking tours. Often it is this context that is critical
for clinicians, therapists and social workers to understand and meet patients’ needs. Whilst offering insight
into the Charedi community, lessons can be applied to other communities with different nuances.
Specific cultural issues that arise are:

In end of life situations, especially where there is a terminal diagnosis, care should be taken in how to
communicate this with the Charedi patient. The Charedi community puts great emphasis on the
sanctity of human life and conveying positive messages to inspire hope and recovery. There is a
culture within the NHS and social care of openness and sharing of information with patients which
does not sit comfortably with Charedi culture. Often relatives may request that the patient should
either not be told, or be protected from the full impact of the diagnosis, which is often disregarded by
clinicians. Family wishes are disregarded in the name of protocol. More insightful information in this
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area, which touches on caring for very sick Charedi patients, attitudes to dying and end of life care can
be found in a comprehensive locally commissioned piece of research 6.

There needs to be more flexibility in use of allocated care hours without risk of cuts to hours because
tasks do not conform to eligibility criteria of social care. There may be cultural factors which influence
how people want or need to use their care hours.

Statutory Service providers should investigate through training and sensitive discussions how it can
enable carers to access support by making it more culturally appropriate.

Community based support from Charedi organisations forms a critical part of patient care. Charedi
providers should be commissioned to deliver services to patients as they can do this within the
context and framework of the patients’ own faith and culture. This is not to say that Charedi patients
should be given anything extra. Rather, greater thought should be given to the importance of
commissioning specific Charedi provision alongside general provision, so that Charedi patients are
also able to access services.
The difference is not only in the type of activities, but also in the way it is delivered. Many mainstream
activities may be inappropriate for Charedi patients, e.g. a visit to the cinema. This can present quite
acutely on mental health wards, e.g. a patient may participate in a “pampering session” when they
are quite sick. Looking back once recovered, a patient was horrified to note how ‘gaudy’ she had
allowed herself to be made up. Another patient had participated in music playing on a Jewish festival.
Fit and healthy, they would never have participated. Co-ordinators of activities and their managers
should be more informed and perceptive as to the suitability of activities.

Mixed gender activities are not taken up by the Charedi patient. Charedi providers offer single gender
programmes in a culturally sensitive environment. Patients may also request a same gender carer.

Some of the commissioned services have had funding cuts and community providers have had to take
difficult decisions around which services to cut. These should be reinstated as they give patients an
enhanced quality of life. This should be seen as an extension of the social prescribing model where
patients are offered non clinical interventions which serve to improve their physical and emotional
wellbeing. This is more pronounced for the learning disabled and those with long term medical
conditions.

Culturally sensitive training for paranoia support or hearing voices support groups, as well as how to
advertise them, should be developed with the community.

There should be more community support for mental health patients immediately after they are
discharged from hospital to match demand. Community peer support or similar is critical at a time
when patients feel very overwhelmed.
6
An Assessment of the Needs of the Charedi Orthodox Jewish Community in Stamford Hill for Specialist
Palliative Care Services. Rebbecca Jennings, St. Joseph’s Hospice, December 2010
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Notwithstanding the crucial role played by Charedi community provision, due to stigma attached to some
conditions and to protect privacy, some Charedi patients will opt to attend mainstream support services.
This affects children, adolescents and adults. These should be audited in terms of numbers and their
accessibility for patient choice.
7. RECOMMENDATIONS FOR INDIVIDUAL PROVIDERS
Whilst some changes may not be very difficult to implement, they may require changes in the culture of how
services are delivered, and this will need to be cascaded from the top downwards.
7.1 ADULT SOCIAL CARE

There should be consistent arrangements for follow up visits and discussions with social workers and
therapists regarding treatment or wellbeing, rather than ad hoc arrangements, e.g. some social
workers visit every month, whilst others make no contact for months on end.

The allocation of a key worker to represent patient’s best interest would enhance services and trust.

Continuity of care would be helped by the same clinician/therapist seeing the patient every time,
where possible.

Care packages should reflect needs of patients with due regard to concepts of autonomy and
independence. Half hour slots for the required tasks are not feasible. These slots should be extended
to at least an hour, rather than half an hour, and should not be cut down as has been the case in
some instances.

The system for allocating cleaning duties for sick patients needs to be changed. This will avoid the
need for Blitz cleaning every time carers or social workers refuse to attend due to the state of the
home.

Direct payments should only be offered if there is confidence that patient can administer well.
7.2 REABLEMENT

Social workers should be made aware that they can get out of panel authorisation for reablement.

When service will be working optimally, a review may identify when shorter packages will be
adequate.
7.3 MENTAL HEALTH

Some nurses and junior staff may benefit from customer care training.

Vulnerable patients should be given senior support to feedback on experiences, good or bad, without
risk to service provision.
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
More effort should be put in to involving patients in target/goal setting and evaluation.

Realistic Action Plans should be drawn up to enable efficient and safe Discharges.

Discharge planning should be improved to avoid readmissions; a peer supporter could visit patients
soon after discharge to smooth the home-coming and adjusting. Carer/husband needs sufficient
notice and support to manage the entire home situation.
7.4 DEMENTIA AND LONG TERM CONDITIONS

Clinicians who fail in their duty of care should be taken to task.

There needs to be better access to GP’s for patients with complex needs.
7.5 GENERAL

Perhaps there could be a voucher scheme as an alternative means of transport to and from hospital
appointments.

Perhaps there could be a voucher scheme for incontinence pads so that they are better matched to
needs of patient, or Incontinence service should provide better quality supplies.

Information and training should be made available to social workers on a range of issues. These
include when out of panel decisions, authorisation for care packages or changes are available, and
information about health conditions they will be assessing for.

Raising awareness of out of hours support available to recently discharged hospital patients and to
patients with complex medical needs and their families. They should be given some navigation to
understand how the services/teams operate during and out of hours and how to contact them eg the
District Nursing team can manage some aspects of acute care avoiding the need to go to A&E; the
CHUSE GP out of hours service.

Hospital transport services should be more sensitive to vulnerable patients.
8. GOOD PRACTICE EXAMPLES
Along the journey of gathering patient stories and experiences, patients, carers and providers praised a
number of practices and service. We would like to share these here as models of good practice. Some are
whole services and others are individual practitioners who go the extra mile.
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
A number of respondents have described how the knowledge and treatment/care of a particular
clinician/therapist, has resulted in excellent care and that patients then rate that particular service as
performing very well. A specific example was a speech therapist, who visited the patient very
regularly for assessing the physical needs around food consumption as well as the social needs of
communication. He demonstrated a real understanding of the whole environment and suggestions
were always sensitive and thought out. He produced person tailored communication aids to suit each
phase and relative has commented that “he did the service proud.”

The Dementia Care Team is really good at referring into different aspects of care. At the end of visits,
therapists always ask if there are any other needs. In this way, speech therapy, physiotherapy and
dietetics are all addressed. Patients found this instance of joined up working very reassuring.

HAIL specialist carer provision has a very good model to improve the mental health patient’s
independence.

Provider experience of the EQUIP (Early & Quick Intervention in Psychosis) model is excellent. This is
available for 18 – 35 year olds with 1 or 2 episodes of psychosis. There is a full range of assistance
which educates the patient to understand and recognise triggers and helps to reintegrate into society
including help with employment. The team is very stable and outcomes are good. Such examples of
good practice should be rolled out to other areas of mental health.

The Clozapine Clinic is extremely efficient. This is a clinic for schizophrenic patients who are on
clozapine. There is a point of referal, a person to speak to and one person taking responsibility.

A provider of residential care had a number of very good services they were very happy with. The
maintenance of equipment is very good, especially the wheelchair service. “You call them up and you
get an instant response. They will come the same day or the next day.”

The Adult Community Rehabilitation Team is excellent. When called, they come in a timely manner,
assess the patient, give exercises and provide the necessary equipment. When a patient is newly
discharged from hospital, they provide grab rails and other vital equipment.

The Dental Services have been described as “Fantastic, 10 out of 10!”
9. IN CONCLUSION
There are many local Charedi residents and patients who fall within one or more of the categories described
above. Once they have been through the necessary procedural issues, they will be awarded a care plan or
more comprehensive package according to needs and means. There is an immense feeling of gratitude for the
different levels and intensity of support, whether it is delivered via statutory or community providers. This is
somewhat overshadowed by the extensive list of issues which have been brought to the fore by this research.
The NHS reforms, budget cuts, realigning of services, new commissioning arrangements and other changing
features, take time to embed and feed through. In some areas, the drive for excellence is apparent, whilst
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other services still have a way to go. It is hoped that the concerns that have been flagged up here will be taken
forward and used to impact training and delivery of services as well as inform future provision.
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