I am seeking a better understanding and treatment for people who have Multiple Sclerosis (MS) because I was a patient in a research experiment which worked well on me...Join me, I am a volunteer for @msresearch at the new MS Meeting Point in the Vassall Centre, Bristol! #MSMeetingPoint.
Care for disabled elderly people is difficult to fund. I am
a young 55ish year old disabled person with a neurological condition called
Multiple Sclerosis (MS) receiving care in the community of Bath and North East Somerset
(BANES). MS is still misunderstood. This is illustrated by shrieking care professionals
proffering their opinions starting with:”In my experience…” It would be
laughable if it were not applying to you…
During endless exhausting meetings and assessments I needed
to stress with as clear as possible details what the result of a good regular
nutritional diet are. I was the one sat in the ill fitting wheelchair and they
did not feel comfortable. Then I understood that what I said was enough when
staff started writing in their notes that I had a good diet.
I was given personal care four times a day. It had to be
given at regular times. They took a bit longer to understand why. Then I
discovered that podiatry was NOT included in any care plan. No one had a clue
how it was going to happen: care workers at the bottom of the pyramid get
sacked and banished if they dare cutting toe nails; District Nurses cannot do
anything but shriek that they cannot do anything; General Practitioners cannot
do anything but prescribe antibiotics with dreadful results for wheelchair
users with erratic personal home care and there are few domiciliary
podiatrists. If you say that you have pain it is not enough.
MY right foot after the operation September 32010
I tried putting pain, puss and blood; it did very little.
With tears added to the previous list I got someone come in two weeks. It
happened six times to the same toe before a very short surgical operation was
Feet are not luxury appendages when you are sat in a
MS people will have more spasms which then added to ill-fitting NHS
wheelchair will give more spasms and bad posture…and bad harassed hurried
personal care because there is more to do in the same amount of time which
leads to abuse:” I don’t care if your foot drops off!” This was ignored. It was
astonishing and on persisting this shocking incident became nothing but some
lack of respect!
I find with dismay that renewing a podiatry appointment has
become more difficult in BANES. The podiatry service, provided by Sirona, does
not have enough funding to employ podiatrists in a health centre. Tweaking my
personal budget for care I naturally self refer and find an assistant to drive
me and accompany me to a podiatry clinic at the Keynsham Health Centre. My toe
nails grow. I also know that there is longevity in my family...The renewal of
appointments is made more difficult as I think it is cynically expected that
people forget, die or give up…slippage in podiatry waiting list!