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 aspects of 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 continuing healthcare.

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 healthcare.

Each 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 care.

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 information to?

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 referral.

Anonymous: What can I do if I don't agree with a decision made about my eligibility for NHS continuing care? Is there an appeals process?

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 your needs.

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 assessment.

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 assessment.

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 successful.

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. They say:

• Intensity does not apply as care is given over 24 hour period
• Complexity does not apply as needs are managed by registered nurses, care workers, GP and primary care services
• 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 caselaw.

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 continuing healthcare.

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 there.

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 continuing healthcare.

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 site)

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 control.

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 budgets.

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 hospital.

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 such care.

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 appropriate.

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 healthcare.

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 challenge this?

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 health need'.

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 dementia.

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 problems.

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 present.

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 the assessment?

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 is:

a) more than incidental or ancillary to the provision of accommodation which social services would be under a duty to provide, or

b) of a nature beyond which a local authority whose primary responsibility is to provide social services could be expected to provide.

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 their decision.

The 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 continuing care. 

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 health deteriorated?

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 time.

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 assessment.

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 yearly.

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 payment.

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 here.

District nurses or GPs should make referrals for an assessment if they consider that the person may now be eligible for NHS continuing healthcare.

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 points raised.

I can’t pretend that it is easy to get retrospective funding, but equally many people have succeeded in doing so over the last few years!

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 reviews.

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 representation.

Anonymous: My mother was only recently screened for continuing care even though she had severe health needs for some time.

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 healthcare.

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 fairness?

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.

The 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 automatically qualify.

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 quality.

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 NHS.

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 without one. 

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 occasions.

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 assessed?

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 nurse care.

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.

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