Sunday, 31 May 2015

UK wide wheelchair user weighing issue

I am afraid that the battle of the bulge is still on if you are a wheelchair user in Bath and North-East Somerset. I relied on the weighing platform of the Vassall Centre in Fishponds. The Living centre lost their contract. They are not going to carry on weighing wheelchair users. The Dietician has discharged me. They relied on my checking my weight. They can only come every three months. Then, they are confident that I am not at risk. It costed a lot to check me. I lost nearly two stones. So, that was it, just overweight. The community service can come but not reliably, could be a three month wait. I need to organise a care assistant a whole day to place the sling around me when the Community technician arrives.  I fell at Paulton hospital when they offered the weighing chair. It is a nightmare....

In 2012, I started a little campaign to get a regular weighing as my GP’s secretary doing admin work kept waking me up in the afternoons when she phoned me to ask about weight, blood pressure, etc...
I do not like to be disturbed. But they came back every now and then…I found out that I could turn this against the system and asked to be weighed as I have not stepped on bathroom weighing scales for a long time.
Why? Why not?
We had some scales until possibly 2005. We tried the clever ones that speak. Then they broke.
…Why not using a simple design?
Because I thought if I could hear my weight just once that would make me happy. I would feel able to do what some people do. I could not read it. Each time I was balancing and thought the scales would settle; I was leaning forwards to have look and I would lose balance. I failed and secure myself upright a few times with a towel rail. Not a good idea. The screws are not that long and the wall made of limestone was not easy to drill. There was a favourite building trick that we used and stuffed the wall with some cement compound.
This lasted twenty years until it dawned on me that I was avoiding an issue…
Knowing my weight was a repeated concern of far too many health and care professionals dealing with me. Name, address, etc.… you know the routine assessment! There was a nice locum asking for my weight as he needed to prescribe injections to prevent deep vein thrombosis. I gave a rough “guesstimate” based on my clothes size. I must be in the upper 70 kilos…possibly 80.
Ah, this is my next campaign; I was pleased to have found a nice new neglected element that is quite important for the well-being of people in wheelchair who like me cannot stand long enough to get a proper reading of a scale.
I was obvious that I was getting bigger and heavier as my clothes size changed. The side panel of my wheelchair issued in 1994 kept breaking. The not so dynamic wheelchair service of the South West of England, based in North Bristol, was providing replacements but was not taking a hint that the wheelchair might need updating.
It was eventually upgraded in 2008. It was shocking that it was necessary to issue a wider one. Not much but so much that using a manual wheelchair going through doorways was hurting. My hands were bruised.
I shared my concerns with a neuro-physiotherapist of the Neuro and Stroke Rehabilitation Service that I got started in St Martin’s hospital in 2007. I mentioned it to a community nurse and my GP for good measure!
The outcome was that there are some ways of getting weighed but they are difficult to access  and poorly understood.
I asked a neuro-physiotherapist because they the only service in my community which I feel has a very clear understanding of what Multiple Sclerosis is. I campaigned from 1997 to get this started in Bath and North East Somerset (BaNES). There was aonfident  need for this. The service is not strong enough and is not covering obvious areas like checking the weight of a Person with MS (PwMS) or organising a protocol covering this. I wonder if a few information days would be necessary to health professionals in our community. I say that because I feel I have caused a few people to pause and frown when my request landed on their desk or screen…
The community nurses were sure that there was no weighing system in place in Keynsham Health Centre. My GP asked why I thought he should refer me to be weighed.

A reading of this abstract might help: Trunk sway in mildly disabled multiple sclerosis patients with and without balance impairment. Exp Brain Res. 2011 Sep;213(4):363-70. doi: 10.1007/s00221-011-2795-8. Epub 2011 Jul 20.
(sway is something I experienced as early as 1979 when I nearly fell off a cliff and I was not so advanced in the Expanded Disability Status Scale (EDSS))

Weighing in the community: needs a hoist,
a care assistant, a scale calibrated
and a technician
I remember pausing a moment in order to control myself. Then I explained that it had been some custom by some of his colleagues to phone and ask what my weight was and that I would like to be able to answer the question myself.  I added that I had not been able to stand steady on scales for at least 20 years. So it was decided that asking the community equipment service to come round and bring some scale.
That came with the need to organize personal assistance in order to put a sling on me in order to hoist me from my wheelchair. The cruelty of the situation was enhanced by the fact that I had to teach my PA how to use a sling (trained staff are difficult to recruit for personal budget holders in BandNES). The community nurse was present and did other checking as she wrote the result in my notes. It was decided to ask a dietician to visit me. I tried very hard to lose weight and I am still losing weight. The people who help me tell me they can see it. I got another weighing session planned three months later. Ideally it should be once a month but I was made to feel I was expecting too much.
I carried on eating less. Less on the plate is best. I bought a nice plate with an easy design to help with the portions of what I eat. I do not eat biscuits. Chocolate is rare and medicinal. The dietician said she did not have to visit often. I would have another weight reading and she would come and do her assessment. She came and assessed me. There is a constant expectation I have noticed lately that a wheelchair user could stand and sit on a chair scale. I always ask for something else. What I would like is to know if there is a wheelchair scale. That would be less traumatic. If the weight of the wheelchair is known; the person would be weighed. It is easy, dignified and does not need so much effort from the service user.
The service is very vague. People are avoiding anything involving an assessment. It means time wasting, shuffling of paper and nothing resulting. That is what I like to avoid. It is also because I heard that one must not “open the flood gates”…So, I wrote one article on the blog of the MS Society Bath branch giving local places which would help and another with the MS Research charity listing centres which might help in the whole United Kingdom. I hope it might help someone to know that the Southmead Hospital in North Bristol has a facility in the outpatients department. It would be very useful if people knew that…I had to know my weight for a general anaesthetic. I am angry that it is difficult to be weighed accurately…
I have persevered and I am still loosing weight!