NHS Continuing Healthcare funding and discharge from hospital

Here we feature a case study from Sarah, whose mum was being pressured to leave hospital – but without an NHS Continuing Healthcare assessment.

At the end of the article we also include a link to some vital tips you can follow if you also have an older relative in hospital.

Sarah wrote to us about her mum who had been in hospital and was seriously ill. She had been in hospital for seven weeks with a terminal liver diagnosis, and the hospital was struggling to stabilise her enough for her to go home.

Despite this, the hospital wanted to discharge her, but Sarah had grave concerns about this – understandably. In addition, no one had even mentioned an NHS Continuing Healthcare funding assessment.

Sarah explains…

“I hadn’t realised how horrific the physical elements of liver failure are. Mum was also permanently confused and had pneumonia. It was the toughest time of my life watching her deteriorate, The hospital was awful, and Mum was getting more and more distressed.

“The discharge team wanted to get her out, and I didn’t know what to say or do to stop them. I couldn’t believe how stressful this all was.

“We were gearing up to let them send her home, but then we found the information on Care To Be Different’s website, and our new knowledge stopped the hospital discharging Mum.

“We also realised we now had more power while Mum was still there, and had more chance of forcing the hospital to do the proper funding assessments. Everything felt like a quagmire, though – I’m so glad we at least had power of attorney.

“We played a strategic game (the hospital’s own game) where we led the NHS to their own conclusion that it was not safe to discharge Mum and that she should also have an assessment for NHS Continuing Healthcare funding. She could stay there for the time being while they completed several diaries of her behaviour and while they risk assessed her.

“It was a relief to have a little breathing space.

“Given Mum’s state of health, a Fast Track assessment for Continuing Healthcare was to be done – although we were warned that if Mum’s care was not at the level where she required specialist nursing provision she was likely to be turned down. From everything we’d read, this didn’t sound right at all.

“I am so grateful for the information we had from Care To Be Different. I used and cited a lot of it with the discharge team. It seemed to really annoy them that we knew so much! I can’t tell you what a help all the information has been.

“Despite assurances that a Fast Track would be carried out, Social Services then assessed Mum and said she part qualifies for NHS Continuing Healthcare funding. I knew this was rubbish. We had no knowledge of any such assessment, and we hadn’t even been invited. I insisted on the correct process.

“We were then told there was to be a Best Interests meeting, as they wanted Mum to go into a nursing home rather than back home, but they said the NHS wouldn’t pay for one-to-one care overnight.

“Having read so much by then, though, I was ready to fight.

NHS Continuing Healthcare and hospital discharge

“I suspected they would decline full Continuing Healthcare funding and that most of the ‘professionals’ involved would be pretty ignorant of the guidelines about Continuing Healthcare and the facts about funding. So my strategy was to educate the ward sister about NHS Continuing Healthcare funding – the NHS guidelines and the law – and to get her onside for the support we would need during the assessment process.

“I knew the assessors would tell me Mum’s care was all social care, and that they would means test her.

“The Continuing Healthcare assessment meeting was four hours long! The assessor kept making reference to the evidence in the diaries and medical notes, which was vague, incomplete and did not paint a true picture of need. When they asked the sister, she came up with everything we needed to pass the ‘nature, intensity, complexity and unpredictability’ element of the assessment.

“I’m relieved to say that, thanks to all the information from Care To Be Different, we have now got full Continuing Healthcare funding for Mum.

“The assessor that said without the description of Mum’s complex medical needs on a daily and ongoing basis we would not have qualified for funding. Sadly it would appear the old chestnut of who you know and not what you know is still alive and kicking. I completely see how flawed the system is.

“They need evidence in notes and yet they allow untrained people to make those notes – if indeed any are kept at all! They do not explain to you as relatives the importance of detailed diaries until the assessment meeting – when they tell you there is too little evidence to show ongoing care needs.

“I know they will do a review in three months’ time. I know Mum will be so much worse by then, if she is still with us.

“Without having read beforehand how underhand the assessors would be, I would not have had the pre-warning to play them at their own game – and a game, albeit and very unpleasant one, is exactly what it has been.

“My biggest learning over and above the information on Continuing Healthcare – and that I would pass on to others – is to make sure diaries are kept every day, and to make sure they are detailed and complete.”

Sarah’s experience is not unusual, unfortunately. When someone you love is dying, the last thing you want to be faced with is a battle with the care authorities. It seems those working in health and social care very often fail to follow procedure, don’t understand the assessment guidelines and/or fail to properly assess care needs. It often falls to the family to exert pressure to get things done properly.

Read part 2: If you’re in a similar situation with your relative, these tips will help you.

If you’re under pressure to get a relative out of hospital, you may be asked to sign hospital discharge forms

There are all sorts of forms you may come under pressure to sign, such as hospital discharge forms, financial assessment forms, a care needs analysis, health needs assessment forms, a ‘needs portrayal’ form, a Continuing Healthcare assessment form – all sorts.

Our general advice is always to be careful.

Only sign hospital discharge forms if you understand what you’re signing (and not just accepting what hospital staff may tell you without further exploration), and if you’re aware of the implications of what you’re signing.

That’s easy to say, of course. When a crisis happens, you often don’t have time to find out what should and shouldn’t happen. Plus, as with most families, you’re unlikely to have faced such a situation before.

Every situation is different, but let’s look here at one typical hospital discharge scenario…

You have an older relative who is now frail, but still lives at home. However, things have been getting more difficult and dangerous for them at home. Then your relative has a fall and is taken to hospital as an emergency. After a few days, when it’s clear that there’s nothing from a medical point of view to keep them in hospital, the hospital declares them fit for discharge.

This raises alarm bells for you, because you know it’s not safe for your relative to go back home and they should not be discharged home. You raise this with the hospital.

At this point your relative may be offered a few weeks of rehab (local authority or NHS funded) in a separate location (often in a short-term care home). A member of social services or a ‘rapid response’ team may also start asking your relative questions about their care needs. Notes may be made and your relative may be asked to sign these notes.

There are several things to be aware of here:

• If there is any doubt about your relative’s mental capacity to understand, retain and weigh up information on their care needs and risks – and communicate their decision about going back home – a Mental Capacity Assessment (MCA) should be undertaken before anything else is done.
• If the MCA reveals that your relative does not have the mental capacity to make a decision about going home, a Best Interests Meeting may need to be held to ascertain what is best for your relative.
• If the MCA shows that your relative does have capacity, and yet you disagree, you can challenge this. This is where having a Lasting Power of Attorney for Health and Welfare can be invaluable.
• Your relative should not be asked to sign anything if they lack the capacity to understand what’s is going on and the implications of any decisions they make.
• If you as their representative are asked to sign a form at this point, make sure you understand exactly what its purpose is. If it contains a few notes about your relative’s needs, be sure to add in writing on the form that this is not a full and comprehensive assessment of needs (if it’s not). Also, write down on the form what your understanding is of the actual purpose of the form.

Let’s go back to the point where you or your relative are being asked questions about care needs, and you’re asked to sign the notes/paperwork prior to your relative going into rehab…

If the sole aim of any suggested rehab care is to get your relative back home again, your signature on that paperwork could potentially be interpreted as your agreement that your relative should indeed go back home. And yet the option of rehab may have been the only option that was mentioned to you.

You may feel the hospital was backing you into a corner – just to allow them to discharge your relative.

There is, of course, another option, which is full time care. This could be either in a care home or through live-in care at home. This takes time to organise, though. In the meantime you may have to insist that there’s a delayed discharge from hospital, so your relative can stay in hospital until appropriate ongoing care has been put in place and all relevant assessments undertaken and care plans drawn up. This includes NHS Continuing Healthcare assessments.

Although this may all sound rather complicated, the golden rules in all of it are:

• Get informed – and if you know a crisis is likely to occur, read up on the process as much as possible in advance.
• Hold out for what you know to be right for your relative at every stage in the process.
• No one should be asking you about money until the appropriate care needs assessments have been carried out – to ascertain who is responsible for providing the ongoing care. If it’s shown that the NHS is responsible, your relative should not have to pay for that care; it will be funding through NHS Continuing Healthcare.
• Be careful what you sign – and if you feel things have not been explained or carried out properly, write this on the form.
• Take one step at a time.

If ongoing full time care does seem the best option, start looking at care homes or live-in care providers as soon as you can. Don’t let the local authority push you into agreeing to their choice of care home – unless you’re happy with it. Choosing a care home needs careful thought.

If you’ve been through such a scenario, what tips and advice would you give to other families in the same boat?

Last week’s Channel 4 news report about Ken Rasheed, an 80-year-old man with Parkinson’s Disease, once again brings shame and disgrace on the way our hospitals and ‘health’care system treat elderly people.

It would seem that little has changed since the Health Service Ombudsman’s shocking report at the start of this year, which exposed many cases of elderly people dying of malnutrition and dehydration in UK hospitals.

The hospital in Ken Rasheed’s case states that “errors” were made and that treatment was “not in accordance with best practice”.

These words ring empty for anyone who has witnessed the demise of someone they love at the hands of a system that not only does not understand the importance of nutrition and hydration but creates such neglectful attitudes amongst staff. Shouting at a patient and not taking any account of a Parkinson’s patient’s difficulty swallowing is hardly an ‘error’.

Health care system is out of date

Aside from the less than ideal attitudes of some staff, reports like this also flag up some insane aspects of ‘health’care that are so engrained in our current system that they are rarely ever questioned:

• If carers and nursing staff are not trained in understanding the key challenges people with Parkinson’s, stroke, multiple sclerosis and other neurological diseases have, then surely we are failing both staff and patients alike at a fundamental level
• The malnutrition screening tools used in hospitals and care homes that measure nutritional risk primarily in terms of calories and weight are misguided. They ignore the need for specific vital nutrients and do nothing to improve health. The stubborn focus on the traditional ‘5 food groups’ is equally out of date.
• The Care Quality Commission is reporting on “whether older people are treated with respect and whether they get food and drink that meets their needs”. However, the physical act of feeding a patient is largely irrelevant if they’re not being fed the nutrients they need to sustain life.

If I had kept my own father at home without proper nourishment until he died of starvation and dehydration, I would almost certainly have been charged with neglect or manslaughter at the very least, and I would no doubt end up in prison. And yet if this happens in a hospital of all places, it’s allowed to continue as part of the system – and nobody is held to account in the same way. The care system and the people working in it, whose actions are those of neglect, seem to be above the law.

Until we put nutritional and physical therapists in charge of care – ones who have been trained outside the closed-minded drugs-for-every-symptom approach, it’s hard to see how care for our elderly people will ever really improve.