PIP (Personal Independent Payment)

[Lesley]

I thought I would give you all an update on the debacle of me trying to claim PIP. It appears that everyone who is claiming for this is virtually automatically rejected. However, having had one meeting/refusal, I was allowed to write to explain why I thought I was entitled, which I did with the help of the very lovely Pat Pinchin. This again was refused. At this point I could then take it to tribunal, which I did. All this whilst you really are not 100% is very trying but I wanted to do this to fight for every Amyloid patient who needed to claim for this. The tribunal was a farce. I wish now I had known what would take place, but hindsight is great. I was extremely nervous and felt like a benefit cheat from the very first meeting.

I was asked such bizarre questions - when I described my neuropathy and pain and weakness in my legs, I was asked whether I drove! I cant walk too far as I do have weak legs and on explaining this I was asked what a normal Saturday routine was for me! I was also asked to describe 'a  day at the NAC'. I tried to explain about my low immune system, neuropathy, weak legs, exhaustion but it all fell on deaf ears as they wished to asked me such pathetic questions. I wish now I had asked them if they knew of Amyloid, how it manifested itself and the after effects of such harsh treatment. I wish also I had taken leaflets for them, if nothing else, to make them aware of Amyloid.  I was even asked how I cope with going to the hospitals and getting time off work (I told them I took all of these days as holidays but what relevance it was I just don't know).

I was exhausted by the end but thankful I was awarded something.  I do hope if anyone else is in the same situation they can learn from my trial and maybe go in more prepared.

Lesley

It would seem the fact I am not prepared to give up my job is my downfall. I tried to explain that I worked all the way through chemo, it was hard and punishing for me but I knew if I gave up just once, I may never get up again. My stubbornness appears to be my downfall!

I was awarded the lowest rate PIP of £21 a week. The Macmillan lady who supported me was upset for me but I did say to her at least I was awarded something which would enable me to have alternative therapies which I think help my wellbeing.

[patpinchin]

Lesley, I am sure your brave sharing of the details of your distressing and traumatic experience will help others in a similar situation. Your dogged perseverance with the support of your Macmillan counsellor proves sheer determination in the face of adversity that many would not have had the courage to pursue, having already been worn down and discouraged by falling at the first hurdle. It must have taken great strength of mind and have been not only intimidating and frightening but both physically and emotionally draining. We are living in very hard times as is evident from the opening lines of your post and sadly this affects so many very deserving people like you.

From your description of the tribunal, it sounded more like a trial than an appeal. The process does not seem to make allowances for a very unwell applicant in need of welfare allowance through no fault of her own. They did not appear to take into consideration the sheer exhaustion you suffer leading to your inability to carry out even the most basic of daily routine tasks such as preparing and cooking yourself a nutritious meal essential to recovery to health. One should not be made to feel like a criminal facing a jury as you did. You were appealing for help through a recognised legislative procedure. The process seems to be somewhat one sided and rather than being penalised you should have been well regarded by your determination to continue working but part rather than full time. It would have been comforting to have been credited for that together with a greater recognition that reducing your hours would help you overcome some of the exhaustion and aid better recovery. It seems to be a system with an overwhelming power which it uses at the expense of the most vulnerable.

As you say, almost certainly the tribunal panel will not have been well acquainted with amyloidosis nor fully understood the complexities of the omnipresent symptoms of an incurable disease.  Your experience emphasises the need for rare diseases to be treated differently by the welfare services.  To some extent, it seems as if the questions you were asked were very standardised. The panel appeared insufficiently qualified and experienced to be making judgements having an impact on the quality of life of a sufferer of an incurable a rare disease.  There is an NHS rare diseases fund staffed by experts in this field for expensive drug therapy, so why not a rare disease section for PIP applicants? There appears to be a great need for officials dealing with cases such as your to be much better informed than they are. There must be a strong case for changes to be made.

I am pleased you were awarded enough to fund therapy that you hope will help you cope better with your daily struggles of the debilitating illness, after effects of a tough SCT and ongoing grief from your very sad bereavement.
I'm full of admiration for you and I am sure your friends here will feel the same. Enjoy your reflexology. 

[Lesley]

Thank you Pat. How any 'benefit cheat' manages to get through this system, is completely beyond me as that is exactly what I felt I was! I felt that I had to convince them I actually had amyloid! Never mind its debilitating effects on your body.
At least I can say I have tried which has always been my motto in life.
I am now sourcing other avenues to try and become happier with my body and that will involve reflexology/hypnotherapy and even meditation. I have discovered a wonderful centre not far from where I live which offers meditation and I'm looking forward to going there.
Thanks as always Pat. You are a tremendous support to me and allow me to vent where others would not understand
xxx