Success in securing NHS Funded Continuing Healthcare
Continuing Care Case Study no. 1
This timeline shows the dates and stages of the case I pursued on behalf of my mother to secure NHS Continuing Healthcare funding. Read a short summary of her healthcare needs first.
This case took nearly three years. They were long years because, at first, I didn’t know how the care system worked, and I didn’t realise that the information the NHS and the local authority were giving me was wrong. As I became increasingly aware of this, it meant I had to research every step.
June 05: Mum went into a nursing home. At the time her fees were £500/week. Social Services gave me some forms to fill in, asking questions about Mum’s money and house. I felt this was a violation of her personal affairs, and I also simply assumed that, because she did have some assets, she’d automatically have to pay for care. So I didn’t send back the forms.
Aug 05: A nursing care assessment was carried out by the NHS – but I knew nothing about it. The care assessors had got my dad to sign it to say he agreed it had been conducted properly. He neither knew about it nor understood anything about it – and he was in full-time care in the same nursing home and had dementia. It was scandalous.
The kind of areas the care assessment looked at for Mum were behaviour, cognitive ability, communication, mobility, nutrition, continence, breathing, skin, medication, psychological/emotional issues, etc. They noted whether she had ‘No needs’, ‘Low needs’, etc. – all the way up to ‘Severe’ and ‘Priority’. The various ‘scores’ would indicate whether she was eligible for NHS Continuing Healthcare.
Oct 05: Assessment result – this stated that she was ‘ineligible’ for NHS Continuing Care. It struck me that to have had enough ‘points’ to be eligible for NHS care, she’d have had to be nearly dead.
2006: I put my parents’ house up for sale – BUT the buyer’s survey showed that the property had subsidence and no buyer would be able to secure a mortgage on it. This was devastating news. It took me a whole year after this to get the insurance company to even agree to cover the structural repairs.
However, the stress led me to start reading up on the NHS and illegal care charges.
April 06: Another nursing care assessment was carried out, but all the care assessor did was add a few comments to the previous one.
June 06: Care assessment result – this stated Mum was ‘ineligible’ for NHS Continuing Care.
Sep 06: I sent my first letter to the Primary Care Trust (PCT) suggesting that Mum was being wrongly charged for long term care. I asked for a review.
Oct 06: I requested evidence of all previous care assessments carried out for Mum, together with details of the Continuing Care Assessment criteria used. I received copies of the assessment notes, but no evidence of how the funding criteria had been applied.
Nov 06: Another nursing care assessment was carried out. I received the PCT’s notes from the care assessment and was asked to comment.
PCT panel review
Dec 06: I submitted my response, picking apart all the inaccuracies and holes in the assessment. My response was to be put to a local PCT review panel, but this was scheduled for the last day before the Christmas holidays. I objected vehemently as I was unable to attend and I also felt that Mum’s case would not be given proper consideration that day. The PCT agreed to review it again in January.
Jan 07: As promised, the local PCT reviewed it again. The result stated that Mum was still ‘ineligible’ for NHS Continuing Healthcare. However, there was still no evidence that the assessments had been properly carried out.
During 2007: Extensive repairs began on Mum’s house.
Appeal for independent review
Jan 07: I requested that an Independent Review Panel (IRP) examine the decision to deny care funding. The IRP was an independent tribunal, carried out at the Strategic Health Authority (SHA). Yet another care assessment was carried out by the local PCT, but no date for the IRP was forthcoming. I wrote to the SHA to find out what was happening.
Apr 07: I’d heard nothing. I filed a formal complaint with the Healthcare Commission, but they responded saying they could help only once I’d got past the IRP stage. Catch 22.
May 07: I filed a LONG complaint with the NHS. My key points including the lack of consideration of Mum’s health records and her health needs, misinformation and distortion of facts in the assessment notes, verbal intimidation towards me by an NHS member of staff, inconsistent information from one assessment to the next, lack of a proper multi-disciplinary team at the care assessments, failures in procedure, lack of care provision for someone with Parkinson’s Disease, as prescribed by NICE (National Institute for Health and Care Excellence), etc.
July 07: I chased the SHA again about the tribunal date. They said they had no idea when a date might be available. The SHA seemed to be able to take as long as it liked. Meanwhile all Mum’s money and assets were being taken away from her.
Oct 07: I knew I would probably need to take legal action, but I was not in a position to fund this myself. Even though I held a Power of Attorney for Mum, it seemed that if I wanted to use some of her remaining money to cover legal fees, I would have to get additional permission from the Court of Protection. I obtained the relevant forms to apply for this permission.
As part of this I had to get some Mental Capacity forms completed, to show that Mum was not able to fight for herself. However, because she had fallen into a black hole in the care home, as far as the wider NHS was concerned, there was not a single GP who knew her well enough to be willing to sign the forms for me. It meant I couldn’t apply to the Court of Protection.
Emergency funding request
Oct 07: Mum ran out of money and I was still unable to sell the house. The small amount of cash she had left was already over-committed to pay for essential physiotherapy, ongoing house maintenance and repairs not covered by insurance. I wrote to Social Services to say they would HAVE to help us.
Oct 07: I contacted the Healthcare Commission again. On account of the SHA’s lack of response about the tribunal date, they suggested fast-tracking Mum’s case to the Health Ombudsman.
Nov 07: I cancelled the direct debit to the care home to pay the care fees; there was no more money in the bank.
Dec 07: Social Services sent me more forms to fill in to apply for emergency funding (Temporary Financial Assistance). The local Council slapped a legal charge on Mum’s house, yet sent me no information about it, nor any terms of such a charge, even when I requested them. (Because my father was also in full-time care, he could not protect the house by living in it.) I wondered if this ‘legal charge’ was in fact legal.
Dec 07: The care home said they would now be pursuing me personally for care fees. This was now about £2,500/month for Mum (and about £5,000/month for both Mum and Dad). This was a real low point. I felt utterly alone in my fight.
Apart from one person at Social Services, who provided some help at a couple of later assessments and put forward some points that would help Mum’s case, NO ONE in any position of authority ever expressed any empathy or any willingness to help me.
Dec 07: The NHS did a very hurried re-assessment of Mum’s needs. It seemed to be a ‘back-tracking’ exercise and meant they could ‘tick their box’ to say they’d ‘followed procedure’.
Progress at last
14 Dec 07: I finally I got the date for the independent tribunal (IRP). I pulled together every bit of information I had – plus all my correspondence plus a letter from Mum’s former neurologist who had (fortunately) agreed to see Mum at my request. (Mum had previously been taken off his patient list because she was apparently ‘too ill’ to warrant seeing him.)
I put together a written and verbal submission for the tribunal. Although I put forward my case myself, I took a solicitor friend from Kingsley David Solicitors with me to the hearing. He added information about the key legal precedents and points of law to support me. It was good having him there and I believe it helped show how serious I was about this. I had also taken him with me to one of Mum’s previous assessments (you can take a solicitor with you, but the NHS will not discuss points of law in assessments), so he could see what sort of process was followed. Again, though, I put forward my points myself.
The IRP looks at the whole process of assessment for NHS Continuing Healthcare on an individual basis and, as the name suggests, it’s meant to be independent. However, when I arrived at the hearing I was very unnerved to discover that, of the panel of 5-6 people, at least 2 were from the NHS.
However… the tribunal decided that the NHS had previously not assessed Mum properly for NHS Continuing Healthcare, and that the decision to find her ‘ineligible’ for funding was illegal.
The NHS had been trying to get away with just paying Registered Nursing Care Contribution. The NHS had said that Mum’s needs were ‘simple and basic’ and that they were not healthcare needs. This had now been proven wrong.
Late Dec 07: I received the final letter from the IRP to say that they were ordering the NHS to refund all care fees paid from April 06 onwards. I put together a claim was for £46,000 (care fees + physiotherapy + interest @ 5%).
My claim then turned into a debt collection exercise.
Feb 08: I asked a solicitor friend to write a letter chasing up the refund.
March 08: £45,000 was refunded – but with no paperwork, statement or breakdown. Very shoddy. Physiotherapy fees were not reimbursed.
9 April 08: I wrote again myself to ask for paperwork to show why the cheque had been less than I’d claimed.
9 April 08: I wrote questioning why there had been no refund for physiotherapy.
30 Apr 08: The NHS Continuing Care Office said it was now a Finance Department issue. However the NHS did instruct the care home to bill them for all future physiotherapy for Mum.
May 08: Mum’s house was finally sold. Very emotional. I was told I’d have to pay back Social Services for all the emergency funding.
June ’08: I wrote again to the NHS asking for a breakdown of the refund.
June 08: I wrote again chasing the physiotherapy refund.
June 08: The physiotherapy fees were finally reimbursed.
15 Aug 08: I wrote to the NHS again for a breakdown of the refund.
End Aug 08: I finally received a letter stating that the NHS uses a different process to calculate interest – one that results in a lower amount of interest being repaid than is usual for this type of debt.
Sep 08: The NHS wrote to tell me they’d paid me £2.58 too much. Needless to say I completely ignored it…
If I hadn’t won my case at the IRP stage, my next step would have been the Parliamentary and Health Service Ombudsman and the Court of Appeal. I would have had no hesitation in pursuing this, as it was clear by this time that the NHS was in the wrong.