Letter I sent to my MP

The letter below is the one I just sent to my MP, yesterday. Am awaiting a reply :-

 Dear .....


The letter below is one prepared by the MNDA. However, I would like to add to this letter by campaigning, not just for there to be a National Neurological Network for quicker diagnosis and monitoring of patients with neurological conditions with a particular emphasis on MND, but, also for a nationally rationalised OT and wheelchair service.

Whilst there are well publicised complaints about a 'postcode lottery' for lifesaving cancer drugs, there is little or no publicity about a similar situation with regards to OT and wheelchairs. There appears to be  a 'blanket' approach with regards to inclusion criteria for a wheelchair without taking into account the, often, rapid progression of MND. Too often, patients are left without the appropriate mobility aid either because they are deemed ineligible (some criteria are frankly ridiculous) or are given  a wheelchair which is completely inadequate for the person's requirements. At this point I'd like to add that, for me, my local wheelchair service has been extremely helpful; but many services are not. This is either due to ignorance or an immovable desire to stick rigidly to guidelines, often misinterpreting them. Both of these reasons are inexcusable.

My real 'bugbear' however is with OT services, particularly those in Croydon.

The year before last I attended a branch meeting of my local MNDA, at which there were representatives of the four 'services involved with MND; there was an OT, Physio, dietician and speech therapist. Each told us what type of information and help they provided for those persons diagnosed with MND. What the OT  said made my blood boil! She boasted that when someone is diagnosed with MND an OT would visit and provide them with information as to what could be provided and the best things for them to acquire with specific reference to lifts. Why was I so angry? In 2006 I fractured my femur in a fall in my kitchen. Already struggling with the stairs my husband and I were considering a stairlift. So, the OT comes and advises, do they? In our particular case the OTs 'information' included telling us that due to the fact that we had both worked our entire lives AND raised two beautiful, responsible, tax-paying,daughters, we didn't qualify for funding; fair enough. We were also given the name of a local company which installed stairlifts. AT NO POINT were we advised that this stairlift would, due to my MND progression, become obsolete as I would no longer be able to get on or off of it unaided and would eventually be too weak in the torso to support myself on it. A through floor lift was never mentioned by the OT so, in our ignorance, we had a stairlift installed at a cost of £7,000.

In 2010, my MND had progressed to the point where we were seriously considering our next step. This entailed the possibility of having a wetroom installed downstairs which would take up a whole room and change the configuration of our house in a negative way. By this time I had a different OT who, herself, has tried her best within the constraints of the OT rulebook. She told us that we should seriously consider a through floor lift if I wanted to continue to sleep upstairs, and, perhaps we should have considered it before. Of course it was a great idea because, even though it meant an intrusion into our dining room and a hole in the ceiling, it was easily reversed and meant that I could still maintain an existence upstairs. I could also continue to utilise our already installed £12,000 upstairs wetroom. The lift was, however, another £11,000 on top of the wasted £7,000.

Perhaps you can begin to see why I was so angry. Being disabled is an extremely expensive business. It is particularly galling when it is caused by something which is not my fault. So, not only do I have to accept the responsibility of paying for any 'major' equipment because of our hard work and consequent savings whilst the obese shirkers receive every available innovative piece of equipment, we also  have to bear the brunt of incompetent advice and continue to haemorrage money in the name of 'provision for all'!

I could bitch all day about unfairness because the lift issue is merely one in a series of negative experiences with the OT services. However, my e mail is really in aid of getting OT services to have proper information packs for neurological illnesses so that we can act from a position of knowledge and not ignorance; preventing us from wasting our hard earned savings which will be needed by the spouse and possibly children left behind.

Of course the ideal would be to have all OT services providing the same degree of 'service' to all. However I cannot see that happening in my lifetime. So, my first request is for a National Neurological Information Pack.

I have a very good friend, Liam  who has campaigned tirelessly for the rights of MND sufferers and already achieved a great deal. He has negotiated a meeting with himself, his MP , wheelchair services, OT and a representative of the MNDA to discuss wheelchair and associated issues. I would like, if possible, to do the same in Croydon.

In order to try to help other MND sufferers I have painstakingly constructed a website which I am trying to publicise with  (hopefully) lots of valuable information as to how to cope with this horrific disease.

http://www.mndlaidbare.co.uk/

Perhaps you could take a few moments to peruse it. You will see that I am serious in my attempt to help ALL MND sufferers, particularly those not astute enough to help themselves. Maybe you could also arrange for me to visit you in your 'surgery'.

Best Wishes

Pauline Hardy