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