Life from my Wheelchair

I have been fighting for almost 18 months to get my care package reinstated. According to UK law, if someone moves from one area to another their care package should automatically move with them. This gives people the security of knowing that they will not have to wait for a re-assessment and will continue to get enough care. 

The Care Act 2014 states that the new Local Authority has to continue with a care package for a period of at least 3 months before reviewing. So when I knew I was going to move to my current flat, I made the required phone calls. As I was moving from one Labour run Council to another I expected the process to be simple. How wrong I was.

Whilst my phone calls were logged in my new borough I was told that they they needed three months notice of a move. I was also told that they expected my old borough to pay for my care for the first three months. 

When moving within social housing as I was, it is unusual to get a months notice as I did. Very often a move has to be done within 7-14 days. My old borough, quite rightly, refused to pay for my care once I moved. 

Several very unhelpful phone calls happened. During one, I was told that as I had chosen to move I had no automatic entitlement to care. Explaining that I had moved area after almost 9 years of waiting to get an adapted flat didn’t seem to count. Eventually I was seen by an OT – occupational therapist and a social worker. The OT arranged to get my bathroom adaptations carried out, eventually. Click here and here for the saga.

The SW – social worker demanded lots of letters from all the medical professionals I had seen recently. Then I was told be they wouldn’t accept anything from my current GP as I was still registered with the GP where I used to live. They did not accept evidence from an out of borough GP. I was unable to change GP at that time as I was waiting for spinal surgery and needed continuity of care. 

I did give them permission to contact that GP, which they very reluctantly said they would do. I was horrified to get an email saying my GP informed them I did not need care. When I visited my GP she told me that no such request had been made and no such letter sent. She actually wrote a letter whilst I was with her completely supporting my need for a care package. The letter also stated no previous letter had been sent.

The SW used the “evidence” of the letter she claimed my GP had sent to refuse me care. I asked for a copy of that letter. Of course, I was refused it. I was told I had to ask my GP for a copy. Yes, a copy of a letter that did not exist! How bizarre is that.

Eventually I decided to contact my MP to ask her for help. She was quite horrified at what had happened to me. We made arrangements to meet so I could give her all my documents. Unfortunately shortly afterwards she suffered a family bereavement, so work on my case was delayed. 

Once my MP was back at work she was soon in contact with the Director of Social Services. I now have an email accepting I’m entitled to care. 

But when? How soon? I was contacted in April by another SW. I supplied him with my new GP details and the latest letter I had from my Orthopaedic team. Then heard nothing. 

My MP contacted the Director of Social Services again once she was re-elected. I had another email today – accepting they have done nothing since the April phone call. A response my MP has described as “pathetic!”  Evidently the letter is “too out of date” to be used. I only see that consultant yearly!

I also had a phone call from yet another SW today. It came when I had a neighbour here and I asked the SW to call back at a specified time. Surprisingly she agreed. It is that call which is the headline of this blog.

I was actually shocked that she called back at the agreed time. She seemed professional and wanted to hear what I had to say. But as the call progressed, I became more and more anxious. She constantly cross-questioned why I needed certain treatments. She couldn’t seen to understand that the surgery I had last year won’t enable me to walk around. (It was done to relive a trapped nerve and had had no impact on my back, neck or shoulder pain.) I knew this would be the case and have come to terms with that.

But, every time I’m questioned about why I can’t have this treatment or that operation it puts both my mind and body in a spin. Should I stop accepting how I am? What if there is some miracle surgery that will “cure” me? Have I not seen the right Consultants? I’m left feeling dazed and confused. It has taken me a long time – almost 10 years to get to the acceptance I now have.

I’ve learnt to live with my limitations and mange to enjoy what I can do rather than pining for what will never be possible. What right does anyone have to disrupt my psychological equilibrium? 

My physical reaction from the phone call was all the effects and symptoms of IBS. Several hours later I’m still feeling sick and my stomach continues to gripe. I’m just glad I don’t have to go out tomorrow. 

The next stage of getting assessed depends on the letter I get after I see my spinal consultant on Friday. Officially I shouldn’t even be seen much later this year. But because of my circumstances the surgeon has made an exception and agreed to see me. 

Update to follow……………