A Year On…Part One: Money.

Well, it’s been over a year since I was living in a nursing home, hitting the media and fighting a fight that couldn’t be won against the government policy on paying for care.

A lot has changed in the past year and it’s time for an update! I shall start with money.

I finally managed to sell my flat at a painfully low price – less than what I had bought it for 10 years earlier. However, I had had enough of estate agents and just needed to sell in order to be able to move on from the nursing home. Plus, I knew the minute the money hit my bank account it was no longer mine anyway.

A month or so earlier I had received the lump sum for my early retirement on grounds of ill-health. It was now time to let the council know there was money in my account.

I had the best part of £100,000 in my account from the sale of my flat and my pension, earned from over 20 years of full-time teaching with progressive MS. £80,000 was gone within several weeks, taken by the council to repay some of my fees for living in a nursing home and to pay for my care in my new home.

I had to provide all of my bank and credit card statements to prove I wasn’t guilty of ‘deliberate dispersal of assets’ ie. giving my money to family, spending it on non-essentials or putting it into other accounts.

I also can’t forget that it was finding out about this situation in 2018 that led to me having what was really a nervous breakdown and probably contributed to my hospital admission in November of that year.

I was allowed £23,250 but as soon as my balance went over that I would once again be liable for the costs of my own care and continue to be under scrutiny for deliberate dispersal of assets. Also, based on my income from my pension I would have to contribute £800 a month for my care. For the rest of my life.

Towards Christmas my social worker suggested applying for Continuing Healthcare funding. This funding is provided by the NHS rather than Adult Social Care and would not be continuously means tested. I had applied earlier in the year with my MS nurse but was not deemed eligible.

It is based on the complexity, intensity and unpredictability of your care needs under the following areas:

• breathing
• nutrition (food and drink)
• continence
• skin (including wounds and ulcers)
• mobility
• communication
• psychological and emotional needs
• cognition (understanding)
• behaviour
• drug therapies and medication
• altered states of consciousness
• other significant care needs

Just as a ‘funny if it weren’t so awful’ aside, a care professional, whom shall remain entirely anonymous (not my social worker or MS nurse!) thought they would helpfully start the process for me. While we were talking I went to clear my throat, which I find difficult as my core/diaphragm is weakened by my MS. I explained this to them and under the heading of ‘breathing’ the very first line of the initial assessment form was ‘ I have no diaphragm’. I couldn’t believe it! Their notes throughout the form continued to be as unbelievably bad. I sent the form back letting them know that it was full of mistakes and that I do have a diaphragm.

They apologised and said they would go through and make improvements. When the second copy came back I didn’t know whether to laugh or cry. The very first line was ‘ I do have a diaphragm.’

Needless to say my social worker filled it out professionally and I passed the initial assessment. The next stage was a full assessment, which involved a team of six people (the assessor who was a nurse, two social workers, my occupational therapist and two of my carers) discussing my care needs for well over an hour.

Mid-January I received the news that I was eligible! So, I no longer have to contribute to my care costs or have my bank statements scrutinised. It’s crazy really to be happy that I am disabled enough to be eligible for this funding. But, eligible I am and I am extremely grateful for it.

It is so, so wrong that people have to spend their life savings on their care, but it seemed particularly unfair that I was only 47, have many years of care ahead of me and had worked my whole life for that money. Shame on you Tories, shame on you.

I was able to claim back the money I had contributed towards my care from the date of my initial assessment and that was £7000 of the £80,000 the council had taken.

So, I am now able to keep my money, spend my money, save my money and give my money away without scrutiny and it is such a relief. But I still resent that £73,000 so, so much!

But it is, thankfully a happy ending. Thank goodness I had professionals around me who thought to apply for me. If you want to find out more about Continuing Healthcare for yourself or a loved one the link is here:

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Now I have started writing again, I shall continue. Next time I will tell you about my housing situation. Spoiler, it also has a happy ending!

A Year On… Part Two: Home