Just over a year ago I began to really struggle with my health. I had worked full time as a teacher since being diagnosed with MS 17 years ago and was currently working as a non-teaching assistant head. It was my ideal job – mostly desk based without a teaching timetable but some contact with pupils, control of my diary, travel around the county and a great team.
I had considered giving up work almost every year since my diagnosis but I loved my job and needed the money. My neurologist and MS nurse always encouraged me to keep working and I am very proud that I did.
However, last year I was finding managing my health and work very challenging and spoke to my MS nurse about it. I really needed ‘permission’ to stop working. I always struggle to judge whether I am being lazy or sensible in slowing down. She laughed and told me I most definitely had permission to retire!
I was hugely relieved and also excited. I wanted to just spend some time living my life, travelling and doing travel writing from a disabled person’s perspective. I would get a lump sum from my pension and also decided to sell my flat as I knew it was no longer suitable for my needs due to the steps into it and a couple of steps inside it. That would give me a large pot of money to start a new life.
I went to speak to the Citizens Advice Bureau about my situation, my plans and to find out more about benefits and how they would be affected.
Maybe I was naive but the answers I was given completely floored me. As expected, I would be responsible for my care and accommodation costs once I had the pension lump sum and equity from my flat. However, what I wasn’t prepared for was to be told that I couldn’t spend any of my hard earned money on anything other than the basics. I have to live as if I am on benefits and anything else is considered a ‘deliberate deprivation of assets’ ie I am spending my money so that I can go on benefits.
I was, and still am absolutely devastated by this. I have worked so hard all of my life and the chance to stop, slow down and take a new direction was such an exciting thought. I can’t give my money to anyone, pay off debts, spend it on holidays – nothing. If I wasn’t disabled and decided to give up work and sell my flat I would be free to do whatever I want with my life. But, because of my disability and need of care I would be classed as cheating the system by living my life and enjoying my hard earned money.
My mental and physical health have suffered non-stop since receiving this news. On reflection I think I had a breakdown and I spiralled into depression. By the end of October I was in hospital as I was physically no longer able to cope. Grief for everything I had lost in my life overcame me.
Whilst in hospital I was told I shouldn’t return to my flat as it was (as I already knew) unsuitable for my needs. So, I became technically homeless and was assigned a social worker to look for emergency, temporary accommodation and a housing officer to look for a more permanent solution.
The social worker found me the nursing home that I am still living in and the housing officer is still trying to help me find alternatives. His first step was to get me on the social housing list but, as I am a homeowner there would have to be exceptional circumstances. My disability is an exceptional circumstance but, rather than put me on the social housing list I am in the crazy situation where I have got to try and buy a two bedroom, (I will need a live in carer) fully adapted flat.
Even on a share to buy scheme my pension lump sum and equity from my flat will not be enough to do this. However, I have to try and buy a flat to prove I can’t. There are very few two bed fully adapted flats in Brighton and Hove. I have yet to sell my flat so couldn’t even try and buy another if I wanted to. It has been 7 months and counting. I am a long, long way off being on the social housing list. Luckily, the nursing home is lovely but I would at least like to know whether there are alternatives.
I had a glimmer of hope last week when my ill-health retirement was approved. I asked whether my lump sum could be paid into a different account and was told yes, it could be. Finally – a chance to protect some of my money! However, they didn’t tell me that the account had to be in my name. I had a few days of excitement but again, those hopes were dashed.
I feel that working all of my life was a huge mistake. I have got myself in a place where I have too much money to be eligible for anything but not enough money to actually meet my needs. And my money not being my own to spend just breaks my heart. Because of the ‘deliberate deprivation of assets’ news I was given my health has suffered so badly that I can’t even do the things I was excited about doing once I’d given up work. I have taken one trip to London for the day since last October, rather than travelling the world which was my plan.
I can no longer drive and would need a hotel room with a full hoist and a lot of help and support from carers. None of that comes cheap or offers a lot of freedom.
So, I am trying to get myself to a place of resignation and acceptance. I fully accept that I am in a lucky position to have money but cannot let go of the fact that I would be in a better position, especially housing-wise if I didn’t have the money.
I am trying to be a little less worried about being caught spending my money – I’m not very good at breaking the rules! And I would hate to be classed as a benefit cheat. But, I think I’m going to go ahead and research fully supported holidays anyway.
I am also trying to think politically. My political views are that people are entitled to the best social care and full support from the government when they need it. I am relatively rich and need to shake the feeling that I should be entitled to spend my money as I wish, as well as on my care and accommodation. It just feels so unfair that I can’t do the same as an able-bodied person with my money. But of course, those with no money at all are more entitled to the support.
I want someone to turn around and say ‘Wow Nina! You worked for 17 years full time with MS, so have £50,000 of your money for yourself and the rest will go on your care and accommodation.’ But, that’s not going to happen. As it is, my money will probably last about two years before it is all gone and the state take over. All those years of work, pushing through the challenges that my MS brought, for nothing (financially).
I am allowed to have £23,000 of savings but what I haven’t asked yet, because I don’t want to hear the answer, is whether I can spend those savings and then top them up. I already know the answer.
I feel guilty for having the money and wanting some of it for myself – but I just can’t stop feeling angry however hard I try.
But I am trying.
Resignation and acceptance… Resignation and acceptance… Resignation and acceptance…