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Who can provide support during a care funding battle?

Having support during a care funding battle can make a big difference

…but who can help – and how? Many people feel they have little support during a care funding battle – and yet acting on behalf of a relative who is in care can be exhausting.

When it comes to funding matters, not only do you continually have to find out what should and shouldn’t be happening, but you’re probably also chasing replies from health and social care authorities, writing numerous letters and emails, attempting to hold the authorities to account and perhaps also trying to hold down a full time job and maintain your own finances – not to mention having a life of your own in between.

So who can provide support during a care funding battle?

Family and friends

One of the obvious people is a close relation – a partner, sibling or your son/daughter. Although they may not understand exactly what things are like from your point of view, having emotional support really helps. Friends can play a vital role in this respect too, of course.

Your relative’s GP

You may or may not have good communications with the GP. Some GPs are more aware than others of the ins and outs of long term care funding. You could make an appointment to see the GP yourself and highlight the difficult situation you face. Some GPs are also happy to write/sign a summary of needs to help support your case for funding.

Care home manager, care provider or care workers

If you have a care worker on your side, or a manager from the care provider or care home who supports your application for funding, it can make a big difference. Many people report a tendency by care staff paint an overly rosy picture when asked questions about someone’s care needs; this is of course very frustrating when you’re trying to show how extensive your relative’s needs are! It can be beneficial to speak to the carers and the manager to explain that this is not about the quality of care provided; instead it’s about showing the extent of the underlying needs that require care.

Specialist nurses and therapists

If your relative has some kind of cognitive impairment, Alzheimer’s or dementia, there may be a Community Psychiatric Nurse (CPN) or a Mental Health Team involved in their care. Similarly, if your relative has a degenerative disease such as Parkinson’s or Multiple Sclerosis, etc, there may be a specialist nurse who can provide helpful input into a funding application or appeal. You may also been able to make contact with a physiotherapist or other kind of therapist who has been involved.

Consultants/clinicians/physicians

In the same way as above, other medical professionals may be prepared to summarise your relative’s specialist needs, for example if your relative sees a neurologist, the neurologist may be prepared to write a letter highlighting the serious issues. Make sure any summary does actually support the specific level of needs you know your relative has, and doesn’t inadvertently dilute it by using language that makes the needs seem less.

Specialist solicitor or other legal adviser

If you need to offload your case and have someone else take it on for you, a specialist solicitor can be invaluable. Equally, if you need advice on specialist matters such as mental capacity, deprivation of liberty or other safeguarding issues (just as examples), a relevant specialist can help hugely.

Specialist funding advisers

If you’re dealing with specific sources of funding, such as NHS Continuing Healthcare, you may need to seek specialist advice. Some former Continuing Care nurses now provide such a service, as do other specialists, who have been through the funding process themselves and now show other families how to do the same.

Coach or counsellor

If you’re finding things difficult emotionally, it may be worth seeking out a professional coach or counsellor to help you. Sometimes it’s easier talking to an independent person than it is to close family. Everyone’s different, of course.

Forums and blogs

There are an increasing number of blogs and online forums about care fees and care funding, including NHS Continuing Healthcare. Some of the big national charities also have forums you can participate in and comment on.

Above all, it’s important to look after you, given how stressful funding matters can be. Get enough sleep, drink lots of water, eat healthily and take one step at a time. At times you may also have to choose your battles and decide how much you can actually take on.

Just having support here and there from people you know are on your side, even if for a short while, can help you stay focused and provide you with the impetus to keep going.

What kinds of people have been able to support you during a care funding battle?

November 25, 2013/3 Comments/by Care To Be Different

Care fees

How keeping a diary helps in a care funding application and appeal

Your care funding application and appeal is much easier with the right notes to hand.

When you’re acting on behalf of a relative who needs care – whether that care is full time or otherwise – there are so many things to think about.

You’re probably visiting your relative regularly, making sure their care seems appropriate, resolving any problems, making sure they have the things they need, managing their finances, keeping an eye on their house – all sorts of things.

If you’re also applying for NHS funding to cover care fees, this can add another thick layer of responsibilities and time commitments.

One of the things that can help, particularly in an NHS Continuing Care funding application and appeal, is to keep a journal or diary. When the NHS makes decisions you disagree with, and you decide to challenge those decisions or launch a Continuing Care appeal, the details you record in your journal now will save you a lot of time later on.

The more information you jot down each time you speak to or receive communications from people in the health or social care authorities, or from the care home or care agency, the quicker you’ll be able to put a response together when you need to.

If you are your relative’s formal representative, for example you hold a power of attorney, be sure to ask for copies of assessment notes plus the rationale for any funding decisions already made.

Keep general notes about:

your relative’s specific diagnoses and their general progression over time
dates and details of any previous assessments for NHS Continuing Healthcare – when they took place, who was present, any available ‘scores’ and what the outcome was
any NHS or local authority maladministration that you’re aware of – and/or things that just don’t seem to have been done right, including things that NHS or local authority staff may have said (or not said) to you.
delays and obstruction in the assessment process
misstatements of fact in the assessment notes
any intimidation or inappropriate pressure put on you to give up your battle for funding
dates and times of any relevant medical or healthcare appointments and other meetings to do with your relative’s health needs, health decline, care provision or funding
any relevant conversations with staff and/or therapists from different bodies/departments (NHS, local authority or private), including physiotherapy, occupational therapy, speech therapy, nutrition, etc. – and what was discussed
other appointments, conversations and phone calls
notes on anything that doesn’t seem right to you about a lack of statutory funding and/or care provision
any other information or notes from relevant clinicians, doctors, nurses or therapists that you think will strengthen your case.

If you’re asking for daily care notes, care records or charts, or other information you need for a care funding application or appeal, and you’re told the information is not available, ask why this is not available and be sure to note down what you were asking for, who you spoke to, when you spoke to them and the reason you’re given for the information being ‘unavailable’.

Be sure to also keep copies of any hospital/GP/care home correspondence and/or letters or health reports from relevant consultants, doctors, clinicians or therapists.

When you’re going through a funding battle, especially an NHS Continuing Healthcare application and appeal, all these notes and details will be invaluable, especially if you keep them up to date and record them at the time things happen.

If you’re not sure what should – and shouldn’t – happen in a Continuing Healthcare funding assessment, you may find our step-by-step e-book helpful: How To Get The NHS To Pay For Care.

How has keeping a diary helped you in a battle for funding?

June 27, 2013/6 Comments/by Care To Be Different

Care fees

Why information about care fees fails people who need full time care

There’s a lot of information available on the web and also from various professional advisers about care fees and who pays what when you need full time care.

However, much of this care fees advice is misleading

Why? Because it usually starts from the basis that, if you have savings or assets over £23,250 (in England), you have to pay for all of your care. End of story.

This is not true!

Whether or not you pay for care does NOT depend on your money or whether you have a house; it depends on your care needs only.

If you find yourself reading that you always have to pay for care if you have savings or a house – or if someone tells you that’s how it is – be aware that they are only giving you half the picture.

Here’s what you should actually be told right at the start:

If you have health needs and you need full time care, health care and nursing care is free of charge – in law – no matter whether you’re in a care home or in your own home. (It can be any type of care home – residential, nursing or other.)

Full NHS nursing care funding is called NHS Continuing Healthcare and it covers 100% of your care costs. In a care home this includes accommodation, food, heat, all care, everything – and you don’t have to pay anything, no matter how much money you have.

The only way to know whether you’ll be eligible for this full NHS funding is to have an assessment for NHS Continuing Healthcare – first – before anyone starts talking about means testing or tries to take away your pension or your home.

However, what almost always happens at the start is that you’re simply told you have to pay for your care. It’s the wrong way round.

The Dept of Health defines NHS Continuing Healthcare as follows:

“NHS Continuing Healthcare means a package of ongoing care that is arranged and funded solely by the NHS where the individual has been found to have a ‘primary health need’… Such care is provided to an individual aged 18 or over, to meet needs that have arisen as a result of disability, accident or illness.”

If you’re told you ‘won’t be eligible’ for this free NHS care funding, question the source of that information. If you’re ‘not eligible’ for NHS funding, it means by default that you simply require ‘social’ care instead.

You can read pages and pages of information about care fees, and speak to a lot of different people, and still be unaware that the first thing that should happen when you need full time care is an assessment for full NHS funding.

The people who have absolutely no excuse for failing to inform you about this are, of course, health and social care employees themselves, and yet they may well tell you that you don’t need nursing care (when in fact you do!), or that you don’t need ‘enough’ nursing care to qualify for Continuing Care funding.

Any attempt to get you to pay for care under false pretences or without you having had the proper NHS assessments can be considered an attempt to defraud.

So, remember these key things at all times when you’re exploring the subject of care fees:

Generally speaking, nursing care is free, in law, in the UK.

The landmark Coughlan case (where Pamela Coughlan succeeded in securing full NHS funding through the Court of Appeal) clarified the law about NHS Continuing Care funding, and your own health needs should be measured against those of Pamela Coughlan.

Be alert for people trying to put you off having an assessment: 7 most outrageous reasons for not receiving an NHS Continuing Care assessment

Be sure to learn as much as you can about nursing care funding and how to get assessed for NHS Continuing Healthcare – before you start paying any care fees.

Why a social worker MUST be involved in the assessment process for NHS Continuing Healthcare funding.

Older relative in hospital and needing ongoing care. Here’s what must happen before discharge.

Getting the NHS Continuing Healthcare assessment process started.

May 25, 2013/0 Comments/by Care To Be Different

Care fees, NHS Continuing Healthcare

How to prepare for a NHS Continuing Care assessment – 15 top tips

Full assessment for Continuing Healthcare – 15 top tips

These tips and insights are taken from our ebook, How To Get The NHS To Pay For Care, which helps you through the whole Continuing Healthcare assessment process…

NHS Continuing Healthcare funding covers 100% of care fees for people who need full time care and whose needs are primarily health needs. This article focuses on some of the things you need to keep in mind when preparing for a full multidisciplinary team (MDT) assessment (sometimes referred to as a Decision Support Tool assessment)…

There are clear guidelines about how NHS Continuing Healthcare assessments should be carried out. Assessors are obliged to use a strict set of assessment ‘tools’ and to assess your relative’s health needs against national minimum eligibility criteria. They are also obliged to follow case law.

The NHS also has a responsibility to ensure that assessments of eligibility for NHS Continuing Healthcare – and its provision – take place in a timely and consistent manner. In practice, however, there are often frustrating delays and appalling maladministration in the process.

Even if you’re not sure if your relative will be found eligible for NHS Continuing Healthcare it’s nevertheless important to get the ball rolling. It’s also a specific duty of the NHS to assess your relative, in the sense that if your relative has primarily health needs, the NHS should be paying.

How to prepare for a NHS Continuing Care assessment:

15 top tips for the multidisciplinary team assessment

1. You should be given a date and enough time to prepare for an assessment. If you can’t attend on the date given, you can ask for an alternative. It’s vital that you attend if your relative is to have any real chance of securing NHS funding.

2. If a relative or friend can attend the assessment with you, it’s a very good idea. You’ll have a second pair of ears and eyes – and you are entitled to take someone with you.

3. You need determination – because health and social care bodies will defend their budgets aggressively and many families report that the NHS and local authority may do this regardless of whether their actions comply with the guidelines and the law.

4. The more money that’s at stake, the more likely the NHS is likely to dig its heels in. So, be very clear about what you expect to achieve. Be bold, be vocal and be persistent – and don’t take no for an answer.

5. No health or social care professional is likely to know your relative as well as you do. That’s why you play such a vital role in any assessment. Start pulling together as much information about your relative’s health and care needs as possible.

6. As you may quickly discover, when you’re dealing with the NHS and the local authority, you may find yourself having to provide facts and information about your relative’s health that you would normally expect to be in their general medical or care notes. Never assume that people already know this information. The reality is that you will often have much more accurate information than the people who are involved in your relative’s care and in their assessment.

7. A full assessment for NHS Continuing Healthcare should be carried out by a multidisciplinary team. It may be largely up to you to make sure that the right people are actually going to attend. because, sadly, there’s no guarantee otherwise that it will be done.

8. Keep a record of what happens at every stage of an assessment – including before and after. What should happen in theory and what actually happens in practice are not always the same thing. Keep a note of any maladministration, as it can count in your favour in further appeals down the line. Procedure is key – and if an assessment is not done correctly, the NHS will have to do it again.

9. Keep a dedicated diary from day one. You may not realise how much you’ll rely on it at the start, but it will be extremely useful when you come to appeal any denial of NHS funding.

10. Record of all dates and times of appointments, meetings, phone calls, copies of letters and reports, conversations with staff from different organisations – and what was discussed – plus views from any therapists – everything. It will be invaluable.

11. Keep notes about your relative’s state of health: how they are and how their health is changing; things your relative says and does and any changes in character, behaviour or mood; any specific needs; things you notice about their overall health and disabilities; information on their skin, pressure sores, weight, mental clarity, speech and communication skills, hearing, sight, sleep, personal hygiene, oral hygiene, mobility and hoisting needs, ease of eating and drinking, nutritional and water intake, swallowing problems, appetite, risk of infections, continence, flexibility of joints breathing, hallucinations, medication (and its unwanted effects and impact on other things); anything unpredictable or complex, plus any general and specific risks – everything. Also, note how well they understand things and can make decisions. This might sounds daunting – but just approach it bit by bit, for example each time you visit them just jot down some notes, including about conversations with care staff that you might have had.

12. Ask questions – as many as you need to ask. If you don’t get a reply, ask why not. Don’t agree to anything if you haven’t had answers to your questions. If someone is reluctant to give you an answer it could be because the information you’re asking for will help you in a way the NHS or local authority doesn’t particularly relish.

13. If you ask for any information and you’re told it’s ‘not available’, make a note of that – what you were asking for, who you spoke to, when you spoke to them and what their reason was for it being ‘unavailable’.

14. Where possible, go along to your relative’s general medical appointments and take notes. Without attending these it’s more difficult to gather the evidence you need to fight your corner. Ask the physician or whoever you’re seeing to summarise his/her view/findings in a letter and send a copy to you. Be careful with this though – it’s vital that the physician understands why you’re asking and that the words they write support your relative in terms of the eligibility criteria for Continuing Care. A GP, for example, might write a summary, and yet what they’ve written doesn’t highlight the kinds of things the Continuing Healthcare assessors will actually be looking for. In such a case the summary could do more harm than good. Once you’ve read more about the Continuing Healthcare eligibility criteria, you could offer to draft something for your GP to simply sign, assuming they’re happy to.

15. Get hold of your relative’s care home care plan and the daily care notes. This also applies to care from a home care provider. Check the care plan and care notes regularly for accuracy and scope. Many people find the notes don’t give an accurate picture of health needs, and you may need to take this up with the care provider. Bear in mind that the NHS will use these notes as part of their funding decision making process.

You’ll find lots more helpful tips on preparing for an assessment – what to do and say, what not to do or say and how to avoid the pitfalls – in our ebook, How To Get The NHS To Pay For Care.

March 29, 2013/15 Comments/by Care To Be Different

Care fees, NHS Continuing Healthcare

Just started applying for NHS Continuing Care?

17 top tips to help you with NHS Continuing Care funding…

In the UK, as a general rule of thumb, nursing care is free – in law – and should never be means tested. And yet there are currently tens of thousands of elderly people in care homes or receiving full time care at home, in the UK, who are being wrongly charged for nursing care.

Why are they paying for nursing care? Three key reasons:

They may have been told they have to pay for care without anyone having done – or even mentioned – an assessment for full NHS funding.

They may have simply been told they ‘don’t qualify’ for NHS care fees funding – or that it’s not relevant for them – because they only have ‘social’ care needs (when in fact they have nursing needs).

They may have had an NHS Continuing Care assessment, but it’s been carried out incorrectly and their family has faced so much obstruction by the health and care authorities (as frequently reported by families commenting on our blog articles) in trying to challenge the outcome, that the person just ends up wrongly paying for care.

It’s one of the biggest scandals in health and social care today. With all the maladministration and misinformation surrounding NHS Continuing Care assessments and funding, it means in effect that the state is stripping people of their personal assets to fund care that should be paid for by the NHS.

If you have a relative with health needs who requires full time care – or who is already in full time care and paying care fees – these top tips will help:

If you receive NHS Continuing Care funding, it covers 100% of the costs of your care. It is for people primarily health needs. There is a Continuing Care assessment process to go through to ascertain whether you will be eligible, and there is a set of Continuing Care eligibility criteria against which your health needs should be measured.
Mainstream news reporting often overlooks the fundamental difference between ‘social’ care and ‘health’ care. They are not the same thing.
Social care is provided by a local authority (Social Services) and is means-tested. (Social care generally covers things like help getting washed and dressed, help getting to the toilet, etc.)
Healthcare and nursing care on the other hand are provided by the NHS and should never be means tested. Discussions on radio and TV and reports about care fees in the press generally fail to make this distinction and, instead, lump everything together as social care – and so it’s no wonder that many families believe that everyone has to be means tested.
The recent discussions about a future cap on care fees is all about social care (means tested care), not healthcare or nursing care. There should never be a financial cap applied to nursing care – because NHS Continuing Healthcare funding must cover all assessed care needs, whatever they are. And it doesn’t matter how old you are or whether or not you’re in a care home. (UPDATE: The proposed cap on care fees is now unlikely to happen.)
Most families’ first point of contact with the various care authorities is with Social Services. Social Services are part of the local authority – and so straight away you are probably dealing with someone whose focus is on means testing and on care provided by the local authority. They might not even tell you that NHS Continuing Healthcare funding is available.
The first questions you’ll be asked will probably be about money. They should be about health needs, not money. No one who needs full time care and who has health needs should have a financial assessment until they’ve first been assessed for NHS Continuing Care funding. If someone asks you about your property or savings and yet no one has assessed you for Continuing Care, ask that person why. This almost always happens in hospital, where the discharge team (often headed by someone from Social Services) will frequently ask about money before health needs have been properly assessed, and you will probably come under pressure to leave hospital before the proper assessment process is complete.
Forcing someone with health needs to pay care fees without a proper NHS Continuing Care assessment is not only a breach of Dept of Health guidelines, but it can also be considered financial abuse and an attempt by the authorities to defraud.
To get the ball rolling with NHS Continuing Care, ask the local NHS for a ‘Checklist assessment for Continuing Healthcare’; you can also ask a social worker, district nurse, your care provider or another health or social care professional. The Checklist is the first stage. If you get through that, you then have a full assessment.
The full assessment must be carried out by a multidisciplinary team of people, not just one. The person/people who actually carry out Continuing Care assessments should understand both the process and the eligibility criteria – and should be properly trained in this. They must also understand the care needs being assessed.
NHS Continuing Care is available whether you’re in a residential care home, a nursing care home, in your own home or somewhere else. The setting in which the care is provided does not matter.
It also does not matter who is delivering the care, i.e. it does not have to be a nurse; instead, it’s the nature of the care that matters. If it is effectively nursing care, you should not have to pay for that care.
Getting the person who needs care to set up a Power of Attorney is absolutely vital – whether you think you’ll need to use it or not. The family member holding a Power of Attorney should be involved in all assessments for NHS Continuing Care.
If you’re waiting for a Continuing Care assessment – or if you’ve had one and you don’t agree with the outcome – read up about it as much as possible, and at the assessment itself, and afterwards, challenge anything you don’t agree with. If you have an assessment and are told you don’t qualify, there is a Continuing Care appeal process.
Continuing Care is NOT the same as the weekly nursing care contribution that some people receive in nursing care homes (known as Registered Nursing Care Contribution or Funded Nursing Care).
If you do agree to be means tested, the value of your property should not be included during the first 12 weeks of you being in a care home.
If you don’t want to sell your home to pay for care, you may be able to negotiate a Deferred Payment Arrangement with your local authority.

Always remember the golden rule: In the UK, as a general rule of thumb, you don’t have to pay for nursing care.

March 10, 2013/0 Comments/by Care To Be Different

Care fees, Care system in the UK

Why downsizing in later life costs you more than you think

Is it really a good idea to downsize when you get older?

Once again the government is ‘encouraging’ elderly people to downsize and to move out of their homes – to free up housing stock for other people.

Once again the elderly are an easy target, and the word ‘encouraging’ does not sound terribly encouraging.

Elderly people and their families already come under significant pressure to comply with the health and social care authorities when it comes to care provision and care funding, and there is nothing to indicate that this kind of pressure would be any less with this new suggestion.

But why is the government instead not encouraging younger and/or wealthy people with large houses to do this? MPs perhaps? Younger people are far more physical able to tolerate moving house. It would hardly be a vote-winner though.

And so, once again the state makes a grab for elderly people’s assets, just as it does when elderly people are wrongly charged for care and are effectively forced to sell their homes.

In later life, moving to a property that is more suitable for your physical abilities is one thing, but downsizing in later life can have significant financial risks, should you subsequently need care. Here’s why:

If you need full time care, you don’t necessarily have to go into a care home; you can choose to receive full time care at home instead. However, if you’ve already moved into smaller accommodation, there may no longer be any space for a live-in carer or nurse.

If you find yourself being means tested for care, remember this: Your home is currently protected against being taken to pay for care if:

your partner still lives there

a younger relative still lives there who is incapacitated

your former partner (divorced or estranged) still lives there and is a lone parent

a dependant under 16 lives there

a relative over 60 lives there (or in some circumstances a friend who has been caring for you for some time and for whom the property has become their home)

However, if you’ve already moved into smaller accommodation, it may not be possible for these people to live in your home and, when that happens, you may no longer be able to protect it.

If you move to a smaller property and this new one is of lower value, you’re likely to free up cash in the process. If the local authority subsequently means tests you for care, that money may be up for grabs by the care authorities.

Your son or daughter may choose to move in with you when you become frail – to provide care and to stop you having to go into a care home. Will this be feasible in a smaller property?

So consider carefully whether downsizing in later life really is a good idea. Take financial advice before you make any big decisions about your property or other assets, and make sure the adviser you speak to clearly understands how care funding works, including NHS funding.

And, remember, if you need full time care for health needs, you should be assessed for NHS Continuing Healthcare before anyone means tests you or asks you to pay for care.

February 27, 2013/0 Comments/by Care To Be Different

Care fees, Hospitals, NHS Continuing Healthcare

Why are elderly people wrongly charged for care?

NHS Continuing Care – and the story of Peter and Arthur…

Every family is likely to be affected by long term care matters at some point, and it’s vital to be as informed as possible about what should (and shouldn’t) happen at the point where an elderly relative needs full time care – and what to do if things go wrong.

We’ve highlighted some of the issues using two fictional people as examples, and we’ve used a hospital setting as the context, because the same principles can be applied to someone still at home and needing full time care…

Peter, aged 52

…has just fallen off a ladder doing DIY at home, and he’s badly broken his leg. He’s taken to hospital where he’s admitted, and he undergoes surgery to pin his leg. He then remains in hospital until he is fit to leave. In the meantime he starts some rehab therapy and has ongoing treatment to heal the bones and the soft tissue damage.

Peter lives on his own, and it’s going to take some time for him to get mobile again and be safe at home. Once he’s out of hospital though, he can access the key healthcare services he needs such as his GP, a nurse at the surgery, a visiting district nurse and physiotherapy. Plus he can claim certain state benefits to help him through this time, as he cannot work.

Does he have to pay for any of this? Absolutely not. Healthcare and nursing care is free in the UK, and this is clearly set out in law.

Arthur, aged 79…

… is frail and has a bad fall at home and breaks his pelvis. He also has other chronic health problems that require access to medical/healthcare services. He’s taken to hospital where he’s admitted and he undergoes surgery, just like Peter. He then remains in hospital. His overall health needs are greater than Peter’s.

However, unlike Peter, Arthur quickly comes under considerable pressure to vacate the bed before he’s fit to leave, and in the meantime he is not offered any beneficial rehab therapy. Arthur lives on his own, and it’s going to take some time for him to get mobile again and be safe. The discharge team at the hospital continue their pressure to get him out, and they tell his daughter to find a care home for him. No one seems interested in the obvious signs that Arthur is deteriorating needlessly in hospital because of avoidable dehydration, malnutrition and lack of beneficial movement. Instead the hospital team ask how much money Arthur has, and whether he owns his own house. At no point was Peter asked these questions or put under such pressure to leave. The hospital does not seem interested in Arthur’s chronic disease.

Misinformation about paying for care

Arthur’s daughter (who is also his power of attorney) is understandably upset and stressed about what’s happening to her father. Her knowledge of the care system, based on what she hears on TV and in the press, and based on what other families say, is that when someone goes into a care home, they have to pay – and no one at the hospital has suggested anything to the contrary.

She knows her father can’t go home at this point and, because she wants him to be safe and can see he’s not being cared for appropriately in hospital, she agrees to find a care home. She succumbs to Social Service’s insistence on having evidence of Arthur’s financial situation, and she agrees to start paying for care in a care home.

Now that the hospital can effectively close their current files on Arthur, his daughter is even less likely to be given any accurate information about care fees and care funding. Arthur will simply continue to pay for what is, in his case, essentially healthcare and nursing care.

Access to NHS services in a care home

Once he’s in the care home, Arthur cannot easily access the key NHS healthcare services in the same way that Peter could – it’s harder to see a GP that actually knows him, he can no longer see a nurse at his local surgery and he will now also almost certainly be told to pay for physiotherapy. The care home will be in charge of this, deciding what he will have and when he might get to see a GP.

There may of course be nursing care provided in the care home. Is he charged for this? Yes.

For Arthur, healthcare and nursing care is no longer free (aside from a small weekly nursing benefit (Funded Nursing Care) that is paid directly to the care home, not to Arthur – but that doesn’t stretch nearly enough to cover the actual cost of his nursing care). Also, it seems increasingly likely that care home residents may have to pay to see a GP – and yet Peter doesn’t have to pay.

So what happened to the free healthcare that everyone else is entitled to?

Peter didn’t need full time care and yet Arthur does – so it perhaps it’s for this reason that Arthur’s finds himself in this situation. But Arthur has greater healthcare needs than Peter. And if care homes didn’t exist, Arthur would be in hospital receiving care provided free of charge by the NHS.

So what’s the difference between Peter and Arthur? One thing: their age.

When you get older and need care, one thing is absolutely guaranteed: You will be asked how much money you have before you’re asked anything else.

Arthur will now lose his savings, his home and everything he’s worked for to pay for care that should arguably be provided by the NHS. Indeed, in law, he should not be asked about his money before the NHS and local authority have looked properly at his care needs FIRST.

So on what basis should the NHS pay for care?

Let’s continue the story…

Arthur’s daughter continues to visit her father and manage the payments to the care home. She puts her father’s house up for sale, and gradually realises that very soon everything will be gone. She also knows that the proposed caps on care fees (due to come into effect in 2020) will actually make little difference to her father.

Then one day she happens to read something about NHS Continuing Healthcare funding for people in full time care – where those people have health needs. She looks into it and realises that, right at the outset, her father should have had an assessment for Continuing Healthcare in hospital before anyone did any kind of financial assessment for care.

And because Arthur is ‘self-funding’ (the ridiculous phrase used to describe someone forced to pay for care), no one in the local authority or the NHS is likely to be proactive in helping his daughter, because they have closed their files. She’s on her own trying to figure out what’s right and what’s not.

After doing some digging, she later finds out that an initial Checklist assessment for Continuing Care funding was in fact done at the hospital, but that she was kept out of the loop and the assessor simply rendered her father ‘ineligible’ for funding.

As her father’s power of attorney she should have been fully involved in the assessment and should have had the opportunity to give the assessor full information about her father’s health and care needs. In addition, the local authority’s (Social Services) primary focus should have been to assess care needs, not Arthur’s money. The local authority could now be in an illegal position.

Arthur’s daughter is now realising just how much incorrect information about care fees she’s been given by the various health and social care authorities, and that no one seems to be on her side.

Getting reassessed for NHS Continuing Healthcare

So now she also faces the battle of getting her father properly assessed for NHS Continuing Healthcare funding, making a retrospective claim to get back care fees he’s already paid and arguing at every turn with assessors – who are the same people who hold the purse strings.

This will be time-consuming, things will probably not be done correctly, the assessors may be unfamiliar with her father’s needs and with the legal framework in within which assessments must be carried out, and the care home may not be helpful as they will receive less money per week from the NHS should Arthur secure funding.

Plus, Arthur’s daughter will now incur her own significant time costs and expenses on her father’s behalf in a bid to get things done properly, and if she wants to get those costs back she will probably have to take legal action.

It’s an appalling situation.

And yet this is what happens every single day to families in the UK when an older relative needs full time care.

Social Services are usually the first point of contact that a family has with the health and care authorities. But Social Services are part of the local authority or local council… and local authority care is means tested. And so the problems start right at the outset.

And if the family asks about NHS funding, they will almost certainly be told they ‘won’t get it’ – and they’ll be given one of these 7 most outrageous reasons for not receiving a Continuing Care assessment.

So if you have an older relative needing full time care (or already in full time care and paying care fees), make sure they are properly (re)assessed for NHS Continuing Healthcare funding. This assessment should happen before they leave hospital, and it should happen before they start paying for care.

Case study: Getting assessed for NHS Continuing Healthcare before you leave hospital

Have you experienced the same situation?

February 24, 2013/24 Comments/by Care To Be Different

Care fees, NHS Continuing Healthcare

Frustrated by Continuing Care delays: Write to your MP

Writing to your MP may help you make progress with a Continuing Care application or appeal…

Many people find NHS delays in replying to correspondence, arranging proper NHS funding assessments and reviewing retrospective claims for NHS Continuing Healthcare wholly unacceptable.

Many families have been waiting months for even the smallest amount of progress to be made, and the current NHS backlog in reviewing claims for care fees wrongly charged in the past doesn’t shed a very optimistic light on any likely improvement in the short term.

That’s why it’s vital to be persistent in your pursuit of funding and not to let the NHS off the hook in any way or allow them to think you’ve gone away and given up.

It’s also vital to be as well-informed about the assessment and review process as you can be, so that you don’t get diverted by the misinformation about Continuing Care that is often given to families by people working in health and social care.

If you’re regularly in contact with the NHS about your funding application, appeal or review, but you’re still not getting anywhere, you may want to write to your MP.

You can find out who the relevant MP is at They Work For You or at Parliament.uk. It needs to be the MP in the constituency where your relative in care is based.

It’s best to put your concerns in writing and it’s also important to ask your MP to do something specific. This could be, for example, to write to the relevant Continuing Care office on your behalf, ask why there has been no progress on your case and to ask what will be done about it.

So, set out briefly why you feel aggrieved and make it clear what you’d like the MP to do.

There’s no guarantee that you’ll experience immediate fresh action on the part of the NHS, but it’s a step forward for you – and the more people who make their MPs aware of the often dire situation with funding assessments, the better.

Let us know how you get on. And if you’ve already written to your MP, did it have a positive outcome?

February 17, 2013/0 Comments/by Care To Be Different

Care fees, NHS Continuing Healthcare

Beat the care fees deadline – claim before 31st March 2013

If your relative is receiving full time care in England and has been paying care fees, you may be able to claim some of those care fees back on their behalf.

You can make a claim whether or not your relative is still in care, and whether or not your relative has already passed away.

You can currently make a claim for period(s) of care from 1st April 2011 to 31st March 2012, and the deadline for registering this claim with the NHS is 31st March 2013.

This retrospective funding is call NHS Continuing Healthcare and it covers 100% of the costs of being in a care home or receiving full time care at home.

The assessment process for NHS Continuing Care is not always straightforward and many people report having obstacles put in their way by the NHS. Many people seem to be ‘overlooked’ for funding, many assessments are carried out incorrectly and many people are also often not told that there is a formal appeals process you can go through at the time.

Many people on first going into care are also simply told they ‘don’t qualify’ for funding and they have to pay, and yet their health needs will have been assessed without due regard to the guidelines.

All this has led to the current situation where so many families are now making retrospective claims.

Here’s what to do in the first instance:

Write to the Continuing Care Dept at the NHS Primary Care Trust nearest to your relative’s care home.

Be sure to include your relative’s full name, date of birth, address while in care, the dates of the period of care for which you’re claiming and a brief statement to say you believe they may have been wrongly charged for care and that you’d like a retrospective review of NHS Continuing Healthcare funding.

If you hold (or held) a power of attorney for your relative, state this in the letter.

Avoid including too many details about your relative’s health at this stage. All you’re doing at this point is making the NHS aware there is a potential claim to be made. If you include too much information at this stage without understanding how the form will be interpreted by the NHS, you could jeopardise your chance of success.

Once you’ve done this, the NHS should acknowledge your letter in writing.

The NHS may then send you an initial form to fill in. It’s important to complete this very carefully – and in line with the national eligibility criteria for NHS Continuing Care – because the NHS will often use this form to decide whether to actually review your claim at all.

For care fees paid between prior to 1st April 2011, the deadline for these claims passed in September 2012. However, you may find this article on retrospective care fees deadlines helpful in this respect:

January 30, 2013/2 Comments/by Care To Be Different

Care fees

Caps on care fees – will they really make a difference?

The prospect of losing your home to pay for long term care can be terrifying – and one in 10 adults faces a care bill of over £100,000. This situation also arises at a time of huge personal transition and often great distress, such as moving into a care home. The impact on the whole family is immense.

The Dilnot Commission was set up in 2010 to look at alternative ways of funding long term care – and to address the problem of people losing their homes and their entire assets to pay for this care.

The proposals that resulted from this Commission included a higher means-test threshold, so that state help would kick in for more people, and a cap on the total amount anyone would have to pay for care.

Although a cap on care fees and a higher means test threshold is at least one way of moving forward, and they do to a degree address the problem of people losing their entire personal assets to pay for care, many people seem sceptical that they’ll make any meaningful difference.

In 2013 the coaltion government announced a £75,000 cap on the care fees anyone has to pay, and an increase in the means test threshold to £123,000. But now the goalposts have moved and this will not take effect until 2020.

The current means test threshold is £23,250 (in England).

It is likely to make little difference to many elderly people needing care, and many will still have to sell their homes to release cash for care fees.

Plus, although the Dilnot proposals have certainly prompted decision makers to look at new ways of funding care, they do not address the problem of inadequate standards of care for elderly people, nor the pay structures and morale in the industry. Addressing these two critical issues may hold more potential for reducing the overall national cost of care.

With the new limits not coming into force until 2020 – and even then the figures could change – elderly people and their families will still have little, if any, short-term protection against the costs of long term care.

Plus, the cap on fees applies only to the ‘care’ element of the overall care fees, with all other costs of being in a care home still having to be funded by the individual needing care.

However, what few press reports mention is that this is all to do with social care – and that healthcare and nursing care is different. Where a person’s care needs are primarily health needs, the person should be assessed for NHS Continuing Healthcare funding before anyone asks about their money.

There are many people in full time care who need healthcare and nursing care – and who are being wrongly charged for that care, because the various health and social care authorities have told them they ‘just’ need social care. This is perhaps the greatest scandal.

It is only ‘social’ care that is means tested – and it’s this social care that the cap on care fees refers to.

Anyone needing full time care for health reasons should first be assessed for 100% NHS funding. NHS Continuing Healthcare is not means tested and so it does not depend on your savings or assets – it depends only on your health and care needs. Everyone receiving full time care and who has health needs (whether that’s at home or in a care home) should be assessed for it.

There is also the tax-free, non-means tested benefit known as Funded Nursing Care, which covers an element of nursing care. Again, this is provided by the NHS.

So, remember that the cap on care fees applies to social care only. NHS Continuing Healthcare funding covers 100% of the costs of being in a care home or receiving full time care at home.

Regardless of what funding you may or may not receive though, it’s still important to plan ahead and review your financial situation in advance, as you can’t necessarily predict what kind of care you may need or what funding will be available in the future. It may be possible to protect some of your money from being taken to pay for care.

It’s important to take good independent financial advice about this. Always make sure, though, that any financial adviser you use not only understands care fees and local authority funding, but also understands that long term care for people whose primary need is a health need is funded by the NHS.

If you have a relative needing full time care, read more about paying care fees.

January 28, 2013/0 Comments/by Care To Be Different