Q&A: NHS continuing healthcare and Parkinson's
Expert continuing care adviser, Pauline
Thompson joined our discussion forum in
November 2011 for a question and answer (Q&A) session on all
NHS continuing healthcare.
Transcript of the session
Hello and welcome to the Q&A session. My name is Pauline
Thompson and I look forward to answering you questions on NHS
continuing health care.
I started my career as a social worker 40 years ago, and then
about 20 years ago moved to be a benefits adviser within social
services as I was concerned so many people were missing out on
their benefit entitlements.
In 1996 to become a policy adviser on care finance with Age
Concern (now Age UK) where I
remained until I 'retired' last March. Since then I have been doing
freelance training and also writing the 5th edition on
Community Care and the Law with Luke Clements.
I am particularly interested in the question of who gets NHS
Although there is better guidance now for deciding who is
eligible, I know that many people still have difficulties in
getting NHS continuing healthcare even though their illness causes
lots of problems and they need a lot of care to make sure the
condition is properly managed.
If you're eligible for NHS continuing healthcare, your care is
free. Considering the potential cost of care, this can make a huge
difference to individuals and their families.
I hope that I can use my knowledge to answer your questions or
point you in the direction of an answer.
Questions and answers
Anonymous: What is NHS continuing healthcare and how do
I know if I might be eligible?
Pauline: A simple question but no simple answer!
NHS continuing healthcare is defined in England as a 'package of
care arranged and funded solely by the health service for a person
aged 18 or over to meet physical and mental health needs which have
arisen as a result of illness'.
In effect, if a person has a primary health need, then the NHS
funds the full package of care. So, in a care home the NHS will pay
the full fee for the home. For people in their own homes the NHS
will pay for the social and health care needed.
As to knowing if you might be eligible, this is more difficult
to answer! You have to show that the quantity or quality of the
care you need is beyond what social services can provide. But of
course this is not easily defined and even with a National
Framework there are still variations as to who gets NHS continuing
Primary Care Trust (PCT) is expected to take reasonable steps
to ensure that an assessment for NHS continuing healthcare is
carried out in all cases where there may be a need for such
Patients should not need to ask for an assessment. However in
practice many people may miss out on an assessment, especially if
they are not in hospital where there is usually more awareness of
NHS continuing healthcare when a patient is being discharged.
So if you are in a care home or living in your own home, and
consider that you have a lot of health needs, it is worth asking
for an assessment for NHS continuing healthcare.
The staff will use a checklist to see if you need an assessment,
and you can complain if you disagree with a decision that you do
not need an assessment.
Laura: As an occupational therapist, if I believe one of my clients
should be eligible for continuing care funding and I can gather the
evidence to prove this need. Who is the best person to submit this
Pauline: Each Primary Care Trust (PCT) has a continuing
healthcare lead person, so that will be the best person to approach
to ask for an NHS continuing healthcare assessment.
It is best to do this as soon as possible especially if the
person is paying for their own care at the moment. If you cannot
track down the NHS continuing care lead (a not unknown occurrence)
then raise the matter with the person's GP or consultant.
Any information you can supply will be very helpful following a
Anonymous: What can I do if I don't agree with a decision
made about my eligibility for NHS continuing care? Is there an
Pauline: It depends at what stage you were turned down.
If you have been refused a full assessment for NHS continuing
healthcare then you need to use the NHS complaints process. The NHS
in England use a checklist.
This is supposed to screen people who need an assessment,
although it often screens them out of an assessment.
It is important to complain if you think you have been wrongly
screened out of a full assessment. It is important to ask for the
completed checklist so you can see whether what is written matches
In Wales there is no checklist, but staff should still be able
to give a rationale as to why you have not been considered for a
full assessment, and give full consideration if you request a full
If you have had the full assessment with a multidisciplinary
team who have completed the decision support tool to help inform
their decision, then you can ask for a review. In the first
instance this will be at a local level, and all PCTs should make
information about this available (including timescales) to anyone
who requests it.
If you still disagree – or if the local resolution process is
causing undue delay - then you can go to the Strategic Health
Authority Independent Review Panel.
It is important when asking for a review of a decision that you
ask for all the paperwork that was used in the decision including
the full decision support tool and the multidisciplinary
You may want help if you are challenging a decision about NHS
continuing healthcare. All areas have to have an
Independent Complaints Advocacy Service (ICAS).
You can call the Parkinson's UK helpline 0808 800 0303 for local ICAS
contact information. In addition some national helplines such as
the Disability Law Service give advice
about how to challenge a decision and sometimes local voluntary
organisations will help individuals with their challenge, and there
are legal firms who help with putting together a challenge.
A recent survey by Community Care magazine of 49
PCTs or PCT clusters found that 40% of completed challenges were
Valerie Pearson: A critical qualification for NHS continuing
healthcare is the nature, intensity, complexity and
unpredictability of the condition.
Our PCT refuses to accept that this applies to people
with Parkinson's and Lewy
Body Dementia and incidents of aspiration.
- Intensity does not apply as care is given over 24 hour
- Complexity does not apply as needs are managed by
registered nurses, care workers, GP and primary care
- Unpredictability does not apply as care needs are
managed within normal care routines
Is it reasonable that people with Parkinson's disease on
medication for the condition do not qualify as the condition is not
considered to be intense, complex or unpredictable?
Pauline: Although the Department of Health
National Framework for NHS continuing healthcare is a
considerable improvement on the previous system, one of its major
shortcomings is that it still uses these concepts of intensity,
complexity and unpredictability, which, as the framework
acknowledges, does not appear in the legislation or the
Indeed it was not unknown in the past for PCTs to argue that
someone's condition is 'predictably unpredictable'!
It seems that your PCT may be relying too much on these concepts
and not going back to the basics of the law, case law and
directions which use the quantity/quality test in order to
establish a primary health need and thus eligibility for NHS
As is made clear in the framework at paragraphs 28 and 31 they
need to take account of what the limits are of what can be lawfully
provided by a local authority in order to establish whether the
person has a primary health need.
They also need to consider that just because a need is
well-managed by the various professionals involved in the care of a
person with Parkinson's, it does not mean that that need is not
Asha: Can someone who is currently receiving funding for
care through direct payments and the Independent Living Fund, so
therefore employs their own carers, keep those carers if their
funding shifts to continuing healthcare?
Pauline: This is a question that is frequently asked, as people
are worried about losing their carers who know them well, if they
get NHS continuing healthcare.
At the moment the answer will vary depending on where you live!
Wherever you live, the local authority direct payments and the
Independent Living Fund (ILF) will normally stop if you get NHS
However, in England if you live in one of the areas which is
piloting Personal Health Budgets, the PCT can make a payment to
you, and so you can continue to employ your own carers. About half
of the English PCTs are in the pilots and many of these are
specifically piloting their use for NHS continuing healthcare.
You can find a full list of the pilot areas here:
Personal Health Budgets Pilot Programme (link to PDF on external
If you don't live in one of these areas then technically the NHS
cannot give you money directly to fund care in the way you want it.
However, guidance to PCTs stresses that they should commission
services using models to maximise personalisation and individual
It is also possible to set up an Independent User Trust to which
the PCT can make payments, so that the money can then be used to
pay for the care needed in the way the person wants.
It was announced in October 2011 that from April 2014 anyone
getting NHS continuing healthcare will be able to ask for a
personal health budget across England. There is no indication
however that Wales intends to introduce personal health
Anonymous: My mother was found eligible for NHS continuing
care a week before she died. From which date should this be paid?
From the day she was found to be eligible or from the date she was
discharged from hospital?
Pauline: If she was assessed and found eligible for NHS
continuing care before she went into hospital then it should be
from that time.
If she was assessed whilst in hospital then it will only be paid
from the time she came out, because she was already getting her
care free in hospital. However you may want to try to argue for the
earlier date if your mother had to pay a retainer whilst in
Unless your mother's condition dramatically worsened at the time
she went into hospital it might also be worth asking whether she
was not entitled from an earlier date.
If a GP or any NHS staff had seen your mother when her condition
had worsened then you could ask for if to be reviewed from the
earlier date. If they had failed to put her forward for a
continuing care assessment then the PCT was not carrying out its
duty to take reasonable steps to assess all people for NHS
continuing healthcare where there appears there may be a need for
Although GPs are not directly employed by the NHS, their
contract requires them to refer individuals to services under the
NHS Act and liaise with other healthcare professionals where
Gaynor: How can people in Lincolnshire access NHS
continuing care? There is no full time Parkinson's support for
patients in Lincolnshire, and what there is is haphazard and ad hoc
with no continuity of follow-up.
Pauline: As NHS continuing healthcare is not linked to any
specific condition, the approach should be the same as anywhere
else in the country. If the person's health needs are primarily
health needs then they should qualify for NHS continuing
It may be in your area that, if there is not the expertise in
Parkinson's, then it would be best to get help from Parkinson's UK
about needs that are specific to this illness to make sure they are
properly taken into account in the assessment.
Anonymous: I've heard of cases where people with advanced
Parkinson's have their continuing care package withdrawn. This is
usually because the person's loss of mobility means their health
needs have 'stabilised' or are 'predictable' even though
Parkinson's is progressive. How could someone in this situation
Pauline: Yes, this is a common problem for people with Alzheimer's as well. It seems
amazing that people whose progressive medical condition is in
advanced stage should be considered to no longer be the
responsibility of the NHS, and that they no longer have a 'primary
Indeed in a court case relating to mental health the judge found
it difficult to see how a person could be considered to no longer
need after-care in the case of a progressive illness like
Mobility is just one aspect of Parkinson's and it important that
all the care needs that arise in advanced
Parkinson's are properly considered in the round in any review
of the decision. Loss of mobility can lead to other health
Particularly important is to ensure that needs are not ignored
just because they are 'well managed'. The
national framework guidance is clear that well managed needs
are still needs and that it is only if the regime has permanently
reduced or removed an ongoing need that this will have a bearing on
NHS continuing healthcare eligibility.
Anonymous: My 94 year old mother was recently rushed into
hospital by emergency ambulance. She has suffered with
Parkinson's disease with Lewy bodies since 2001 as well as dementia
and a lot of other serious health conditions.
The only bed was on a respiratory ward. I asked for an
assessment for NHS funded care. This took the form of a
discharge meeting with the multidisciplinary team and a care
facilitator all from the ward she was on and an occupational
therapist representing the Parkinson's department.
No-one with a great knowledge of my mother's health
conditions were present (ie her Parkinson's consultant, her
psychiatrist or a psychiatric nurse). My mother herself was not
Should the assessment for continuing care be made by
experts in my mother's illnesses or just the multidisciplinary team
on the ward she is on? Does the patient not have to be present at
Pauline: A multidisciplinary team (MDT) is defined in the
National Framework as 'a team of at least 2 professionals,
usually from both the health and the social care disciplines. It
does not refer only to an existing multidisciplinary team, such as
an ongoing team based in a hospital ward. It should include those
who have an up-to-date knowledge of the individual's needs,
potential and aspirations'.
Practice guidance further lists a number of different
professionals who could be part of a multidisciplinary team, but
cautions that 'this list is not exhaustive but is intended as a
prompt of who may need to be invited to provide evidence regarding
an individual's needs so that as accurate and comprehensive picture
as possible can be made'.
Given her various conditions then, the multidisciplinary team
should have consulted with the professionals who know your mother
well and they should have had input to the Decision Support Tool
that helps inform the multidisciplinary team's decision.
The patient does not have to be present for the whole of an MDT
discussion to come to an agreed recommendation. However the
practice guidance reminds them that the patient or their
representative should have been involved continually in the
process, and have had chance to make comments on the
Decision Support Tool (DST)and be present for part of the
meeting to give their views on the completed domain levels.
Meloidogyne: My Dad was diagnosed with Parkinson's in his
early 70s (he is now 90). Continuing care was refused because the
NHS seemed to think that his chronic symptoms were just part of
'old age'. Is this a common problem?
Pauline: You certainly cannot be denied NHS continuing
healthcare on the basis of your age! However, a diagnosis of
Parkinson's will not automatically mean that someone is entitled to
NHS continuing healthcare.
The test the NHS have to apply is whether the healthcare needed
a) more than incidental or ancillary to the provision of
accommodation which social services would be under a duty to
b) of a nature beyond which a local authority whose primary
responsibility is to provide social services could be expected to
This is known as the quantity/quality test and means that the
NHS must look at the amount of care someone needs and the type of
skills needed to care for them (and this does not necessarily have
to be a qualified person - often families have become experts
in such care).
If the person is beyond the quantity/quality test then the
person is considered to have a 'primary health need' and is
eligible for NHS continuing healthcare.
Unfortunately this is not an exact science. But clearly someone
should not be ruled out of NHS continuing healthcare because their
condition is being put down to 'old age'. If your father has had an
assessment for NHS continuing healthcare and you want to challenge
the decision you should ask for a review, and also ask to see all
the paperwork behind that decision. This will include the completed
Decision Support Tool which staff have to use to help inform
Welsh Decision support tool is part of their National Framework
document and has some slight differences to the English DST.
Anne: My mother had dementia and Parkinson's with Lewy
bodies. Social Services assessed her needs as 'substantial' and
'critical' and arranged a place in an Elderly Mentally Infirm (EMI)
care home for her own safety initially as respite. The
Local Authority carried out a financial assessment for the respite
care and she was found to be eligible to pay. No one considered NHS
While in respite care, her psychiatrist said she needed
permanent 24 hour a day care due to deterioration in the dementia
and Parkinson's. But she had no further contact at all from
Social Services for almost 5 years.
Should my mother have had annual reviews to once again
assess her needs and her eligibility for continuing care as her
Pauline: Sadly I suspect that because your mother went into an
Elderly Mentally Infirm (EMI) home and not a nursing home, the
question of NHS continuing healthcare was never considered at the
The guidance is clear that NHS continuing healthcare can be
provided in any setting -which includes residential and EMI
homes. It is only when people move into nursing homes that there is
a requirement to undertake an NHS continuing healthcare assessment
before deciding whether to just pay the registered nurse cost.
Social services should have assessed your mother's needs before
doing a financial assessment and if they considered that her needs
were beyond what they could provide as a social care agency then
they should have referred her for an NHS continuing care
Unless social services had made the contract with the home,
there is no obligation for them to undertake reviews. It is one of
the areas where people who pay for their own care are in a worse
position than those funded by social services. Where social
services provide the package then cases should be reviewed at least
One final point, you mention your mother suffered from long term
mental health problems. If she was ever placed in hospital for
treatment under section 3, 37, 45A, 47 or 48 of the Mental Health
Act 1983 then it is worth seeking advice about this as she might
have been eligible for free aftercare under s117 Mental
Health Act. In the first instance you might want to contact
Mind, the mental health charity.
Anonymous: My mother has been in a care home for a number
of years because of her Parkinson's with Lewy bodies and
Alzheimer's. She is self-funding. She has never been seen by
anyone from social services since she moved in.
Her needs have changed over the years and she is now in
the later stages of Parkinson's (she has had it for 11 years). I
think she should have been eligible for continuing care many years
ago due to her health conditions.
Should she receive a review of her care plan and to see
if she would be eligible for continuing care?
Pauline: Social services do not review people who are
self-funding. This is where people who fund their own care often
miss out on the oversight of social services.
If the care home your mother is in is a nursing home then she
should have been seen on a yearly basis by an NHS nurse who should
assess her for continuing NHS healthcare before doing the
assessment as to whether or not she needs the registered nurse
However, if she is in a residential care home, then it is more
likely that either the care home or relatives would need to make a
request. Again, people in residential homes can tend to miss out
District nurses or GPs should make referrals for an assessment
if they consider that the person may now be eligible for NHS
Anonymous: I would like to apply for a retrospective review
for the care homes my late father paid. Can you tell me what
process is involved in doing this please?
Anonymous: My mother recently qualified for NHS fully
funded continuing care. Sadly she died soon afterwards. I
believe she should have qualified earlier and am thinking of asking
for a review for retrospective funding. Is this a lengthy
process? Also, can it be successful or is it even harder than
trying to get the initial NHS continuing care?
Anonymous: My mother has just received NHS continuing
care and I would like to ask for consideration to be given for her
to claim the care fees back to when she first went into
care. Do I need a solicitor to do this or can I do it on my
own on her behalf?
Pauline: As these 3 questions are all about retrospective
funding, I will answer them together and try to cover all the
I can’t pretend that it is easy to get retrospective funding,
but equally many people have succeeded in doing so over the last
Obviously the further back you would like the funding to apply,
the more difficult it becomes. This is partly because of the
difficulty in gathering all the evidence together, but also because
you could be dealing with different eligibility criteria at
different times, and the PCT may have changed.
The Department of Health has tried to close requests for reviews
prior to April 2004. It is still possible to get a review of a
period longer than that but only if the post-2004 period is longer
than the pre-2004 period. In Wales it is April 2003.
If you want to review a period that predates that National
Framework (in England this is October 2007 and in Wales August
2010) then you need to be aware of the guidance and eligibility
criteria that applied at the time the decision was made.
The process is the same as any other review, and you need to
contact the local PCT to say that you want to request a review. It
is best to state when you think NHS continuing care should have
started and as far as possible give the reasons why.
It may be a good idea to ring one of the national helplines such
as the Disability Law Service or
Age UK which may be able to give
some general advice about how best to write the letter.
The Alzheimer's Society has a more
detailed leaflet - 'When does the NHS pay for care?' about NHS
continuing healthcare decisions including example letters and tips
about reviews. Although it is written to help people with
Alzheimer's, it contains useful information for other patients.
As the person complaining, it is important that you see any
documentation that is relevant to the review and you may need to
make a request to see the files. You may also have to do some
digging yourself to ensure that any care home files are included as
well as NHS and social care files.
Retrospective claims often need to go beyond the first stage PCT
review and if you are unhappy with the local review you will need
to request a Strategic Health Authority Independent Panel.
If that does not succeed, you can take your case to the Health
Ombudsman. The Ombudsman has dealt with many retrospective
While it is possible to do it yourself it may take tenacity and
can be a long process. Sometimes it is useful to have someone to
help - if a local voluntary agency offers this then you could
use them or you might want to consider having a solicitor. It is
important to choose one that either deals with community care or
public law, or has a particular interest and has developed
expertise in NHS continuing healthcare.
Don't be afraid to contact several solicitors and ask about
costs, how many NHS continuing care cases they have dealt with and
how many have been successful. Also be sure to ask whether you
might be eligible for legal aid to help you with the costs of your
Anonymous: My mother was only recently screened for
continuing care even though she had severe health needs for some
She could not feed herself, could not weight-bear and it
took up to 45 minutes to administer her medication orally. I
asked for an assessment for continuing care on a number of
occasions. When they finally assessed her, I was not present. They
used a checklist and the information that they put there about my
mother was completely inaccurate.
A friend of my mother on another ward had the same
assessment done but her daughter was present along with a
psychiatric nurse - she was granted NHS continuing
How can we ensure that the checklist for continuing care
is completed consistently and a code of practice for filling in the
checklist is adopted by nurse assessors to ensure uniformity and
Pauline: I think it is important that families use the
complaints procedure if they consider the checklist does not
correctly reflect the patient's needs.
checklist can be completed by a range of professionals.
Guidance states that the person should be familiar with the
National Framework and the Decision Support Tool. It also
states that a person should be given a written decision and details
of the right to request the PCT reconsider the decision and the
further right to complain.
It is important that all staff completing the checklist are
adequately trained, and that where complaints are made then the PCT
should learn from those mistakes.
Anonymous: Should an NHS continuing care assessment be done
before a local authority does a financial assessment and deferred
payment schemes etc are drawn up?
Pauline: It is the NHS that is responsible for the assessment
for NHS continuing healthcare.
If the person is in hospital then under the Delayed Discharge
Directions the person must be assessed for NHS continuing
healthcare before social services is put under notice that the
person is ready for discharge.
In other situations social services should assess needs before
doing a financial assessment anyway. If there is any doubt that the
person might be beyond the limits of what social services should
provide, then they should be referred for an NHS continuing
healthcare assessment before a financial assessment is done.
Financial assessments should only be completed after the social
services department is satisfied that they should be responsible
for the person based on their needs assessment.
SeaBee: We applied for NHS continuing healthcare funding
for my dad after we were medically 'ordered' to put him in a
nursing home. He was evaluated and scored and despite getting 1
severe and 3 high scores and being PEG tube-fed, he was deemed not
suitable for funding.
We are currently appealing this decision as were
surprised that if you are effectively told to put your relative in
a nursing home to get the care that they need that you would not
What are your thoughts on this?
Pauline: Yes, it would seem logical that anyone who is so ill
that they need to go into a nursing home should automatically
qualify for NHS continuing healthcare. But unfortunately the
leading case known as the 'Coughlan' case did find that social
services can fund nursing care that is low in terms of quantity and
One of the major problems with the decision support tool and the
guidance in it is that it implies that unless a person has needs
within the 12 domains of 1 (priority) or 2 (severe), then they
would not necessarily be entitled to NHS continuing healthcare.
Although the guidance goes on to say that patients might still
qualify for NHS continuing healthcare if they score one severe or a
range of highs and mediums, such people are often turned down.
It is important that the levels given for your father have a
clear rationale and properly reflect his needs. In addition there
should be consideration of the interactions between the different
needs, as often one need can exacerbate another.
Above all, there must be consideration of whether the patient's
needs are beyond the limits of what social services are able to
provide as a package of care. Social services should have been
involved in the assessment, and given the high level of needs your
dad, they may well consider that he should be funded by the
I do hope that you have been able to see all the papers so that
you can see where you disagree with the decision and that your
appeal is successful.
Anonymous: When my mother was discharged from hospital I
asked that I be at the discharge meeting but she was sent home
She was back in hospital with a heart attack in May and
I made the request again in writing. I arrived at hospital and
the doctor had just discharged her back to residential care. I
told the sister I wanted to be at the meeting before she was
discharged back into residential care. She looked at me in
disbelief and said we all thought she was in nursing care including
the doctor who discharged her.
Her GP has been out to her 32 times since February and
district nurse on several occasions plus paramedics on 9
Should she not be assessed for continuing care or at
least nursing care?
There has been no input from social services for a
number of years. Does she have to be in hospital to be
Pauline: Before answering your main question, you would
certainly appear to have a complaint about the way your mother was
discharged without your involvement.
As your mother is in a residential care home, she would not be
assessed for nursing care, as the nursing she gets will be from the
district nurses so free anyway. The nursing payment is just for
those in nursing homes where a part of the fees are for registered
However people in residential care homes are just as entitled as
anyone else to NHS continuing healthcare. As I said in another
answer, all too often people in residential care homes do not get
considered for NHS continuing healthcare.
It may well be worth taking up the question of an assessment for
continuing healthcare, either through her GP or directly with the
PCT lead on NHS continuing healthcare.
Find out more about continuing healthcare