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.
“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.