Wednesday, 28 June 2017

Weight management - weighing wheelchair access

I need to clarify: MS Research did not survey the surgeries in BathNES. A student when on placement with the
Wheelchair user being weighed at
the Vassall Centre in Fishponds,
Bristol by Marie of the
Driving and Mobility Service.
It is still possible...but for
how much longer?
dietician did.

Nurses took a very long time to suggest asking the Community Equipment service. After I got hoists at home in 2008, following the long stay in hospital, this became a remote possibility. It was very much dependent on getting someone to help me with a sling in place was not in my care package and the mobile hoist scale not available easily...It was a bit better than once in a blue moon.

It became important to know my weight before surgery in Southmead ( the pre op check staff were not able to weigh me).
I decided to ignore my care package and did a trip to Paulton Memorial Hospital (PMH). There is a weighing seat that is offered ( this is only available in the afternoon and using my own assistance which meant that more staff were needed to hoist me from the floor with the digital hoist...not the first choice as it is for the in-patients). It has been such a long quest that I wrote about explaining why...!

I asked my GP. My knowing my weight was now urgent. Losing it also. My GP did not realise what I meant by not being able to know my weight. I had been referred to a dietician a few  months before but that does not mean one is going to be weighed.
I found that the dietician can come only every three months. Maybe six months or it can be less.

I found that the Vassall Centre has a weighing facility in the Driving and Mobility Service of Disability Living Centre. Some bending of the care package meant a trip to be weighed once a month was a possibility. The service had been able to help with a hoist as their Occupational Therapist (OT) was able to check my wheelchair weight. It was called Living and Mobility but it lost its tender and has been renamed. The service carries on to help us. It does not take any new people on their lists. I think it might not last for long as the weighing platform needs calibration.
The local MS therapy centres in Bradley Stoke, South Gloucestershire and Warminster, West Wiltshire have a digital hoist for their members. So transport and membership fee are needed...I think that the trouble of getting as far as these two needs a lot of care and planning regarding my catheter.
The dialysis service in Bath (RUH) has a weighing platform for their kidney patients.

Wednesday, 31 May 2017

My home physiotherapy kit

This is the kit I use most days for my "rest" period on my hospital bed in the afternoon. I do not use all the kit every time be reassured of this and it took me a long time to think I had reached the stage that needed a new aid. 
I rest on the bed. It is resting my back which has been "standing" from 8:30 in the morning. It is tiring to be sat in a wheelchair, especially with someone talking to me. I need to look up and try to get the conversation going. I have to move and reach for objects around me. It is like running on the spot!
By 14::00 I welcome a stretch on my back, it feels so cool and calming.
On #worldMSday, I am ready to share my kit on this blog:


  1. Yellow 45 cm gym ball
  2. Green transfer board also commonly named banana board
  3. Red elastic band (I wear it around the knees but it has other uses!)
  4. Blue 55 cm gym ball
  5. Red stretch band
  6. Blue stretch band
  7. Yellow 1  kg set of bells
  8. Leg lifter
  9. Looped sliding sheet
  10. BedCaddie: ladder-like design with 3 hand-grips to make it easier to sit-up in bed.
  11. Second leg lifter (I can pretend cycling in the air!)
  12. Second looped sliding sheet
  13. Foam column 15 cm diameter long enough to put across the bed
  14. Bed handle that fits the side of the hospital bed
I have a good static air mattress. I cannot use a gym mat or gym floor. I can use a wheelchair but it is limiting the movements. I roll on my belly and raise my head backwards. 

Monday, 15 May 2017

Buying home care products for MS

Now, that is it… I take the plunge and will breach the delicate subject of continence and home care products. When Multiple Sclerosis (MS) progresses, there is a sad common aspect that remains very private…it is continence. Do talk about this to your neurologist. It works very well: in the Bristol Brain Centre I have a whole multidisciplinary team looking after me. There is no holiday; I got a letter from the Urology team today!
Home care products

Meanwhile, there is the domiciliary care that needs to be managed! It might involve buying gloves for the assistance that you receive and continence pads…so you can keep yourself looking and feeling your best, whatever your condition. 

I had found a company that provided me with products very reliably. I am able to order online or buy from them on the telephone. This beats buying packs of bags one at a time or feeling lucky to find any at the supermarket. 

My next question was about being VAT exempt...They have sent me a form...They need a form signed with the order reference each time you place an order. When your orders are over £50, the delivery is free. It is also discreet and dignified to have them delivered. It is helping to find a way of getting supplies  without nursing staff telling you that you do not qualify for any help according to their criteria.

I will get a VAT refund. 

Have you found an easy way to get the products you need online in the United Kingdom? Have you found a good online supply that delivers to your home? Is it without VAT for People with a chronic condition like Multiple Sclerosis?  Let me know :)

Tuesday, 2 May 2017

Nobody cares in WECA

I am still hoping that a new Metro Mayor for West of England Combined Authority (WECA) would mean a clear chance to develop a truly well-motivated and skilled population capable to give care and support to people with long term conditions
In Bath and North East Somerset what is happening is not very nice, but not many want to know about receiving care and support. There is a Carer Centre which is for people who care for a relative or partner where they get help and respite. Care is all the time hooked up to Health. There are organisations providing or dealing with Care and Health. It can be in another order: Health and Care. It is in big letters: must be important! That is not training anybody urgently with skills relevant to mobility impaired people with long term conditions, like avoiding falls and managing mobility equipment.
Nationally here in the United Kingdom, there are courses and diplomas dealing with care always showing a successful outcome. Young people usually female with gowns and degree hats thrown in the air...I want what they are having, I thought! After a look, it's not relevant to anyone like me managing a personal budget for social care. No high flyer like this would have practical skills. I fear they would just call me "dear" and talk earnestly about well-being, equality and inclusion.
Now let’s look at the receiving end…I am sad to know that people who thought they could work and give care coming from a hairdressing or beautician career do not remain in this job and care no more. I think no one is exempt of care receiving or giving. It is not considered a skill big enough to develop like reading and arithmetic. Yet there is a need for people doing this job. .I think that it is a sector that is top heavy, lots of cowboys you know the rest... Why has it not come to the notice of any one yet? It would make the like of me feel more independent and really included in the future of the West of England.
Laurence Robb
Standup4ms

Wednesday, 19 April 2017

Care in the community

I am very pleased to have typed a few lines last week. It was after reading the leaflets of the candidates for the Metro Mayor. The letter got printed on page 10 of the No 270 issue of a local journal TheWeekIn ...
 I find this very sad and hopeless from the start. We are going to have some beginning of a devolution. I received the information through the letter box. It explains carefully what to do.
However, when I start reading each of the candidates pledges I cannot see that care appears anywhere. There are people living independently in the West of England who strive to manage their care. This means recruiting and employing their own staff with a social care personal budget.
I think there is a possible aspect of the education and future of the West of England that should be prominently brought forward in any #WEvote debate. There is need of training a well-motivated, skilled cohort of people of any age that would be after all well housed. Furthermore, having good transport, they would be able to provide care in the community.
 Why has it not come to the notice of any one yet? It would make the like of me feel included in the future of the West of England.

Wednesday, 8 February 2017

Toe spreaders and foot care

I have left you rather a long time sat on the loo. I am sorry about this. I hope that you managed to get dressed. Forgive me, I have been rather busy...
There is something very important that I must write about today. I have written about podiatry before. It is very important to get a regular podiatry appointment: if your mobility is reduced in the lower limbs you may get into difficulties at some stage when you fancy cutting your toe nails.

My first idea was not the brightest..I had been told that social care did not permit the care assistant to cut toe nails. Even if I was not a diabetic. My eye sight was not good, my ataxia in my arms was not helpful so I bought an extra large long handled pair of scissors. What a waste! I could not use these. I could not find any qualified and wheelchair accessible podiatrist (/poʊˈdaɪətrɪst/ poh-dye-eh-trist). I could not go anywhere near one if I had known one

I found myself trapped by the system. I did not know a friendly supporting person that would have simplified this for me. I hear that in some part of the country they talk about a "care navigator".

I bought a pack of emery files. I had a first toe nail infection before I got referred to the podiatrist. As you will understand it I got a bit obsessed in trying to avoid the infection that remained a threat. There where moments of poor staffing in my area for the toe clipping service with barely any explanation. I had difficulties getting the staff sent to me by the commissioned care company sent by the social services of Bath and North East Somerset to help me file my toe nails at home when I felt pain.

I will cut short this painful story after six toe nail infections to the same bit of the same toe...oh and some
abuse from a care worker. I got myself in the not very frequent toe nail clipping clinic available in my community.

I got in the rhythm: phone after two weeks then filing and clipping two weeks before an appointment...That will take care of odd sharpness. When one day I remarked to the podiatrist that my MS was definitely affecting my toes. I was always twitching and having toes flexing upwards. At the same time I was still using an NHS wheelchair with no foot rests... I explained each time that it was easier for me to approach the loo to empty my catheter leg bag. My commode was always on the loo, just in case.

The very good idea was to buy following a podiatrist's appointment a pair of gel looped toe spreaders. It reduced some of the spasms. I have not needed botulinum toxin injections perfomed by a neurologist and a radiologistsince. Any spasms are due to forgetting the spreaders or placing them wrongly.

These bought spreaders were too wide and my second toe turned black although I did not feel pain. This went on for a couple of years.

I worried about this and mentioned it to the podiatrist. I was lucky, it was very easy to shape a couple of
LR looking at bespoke toe spreaders.
spreaders that would fit me. They are part of my routine. They get rinsed at night and drip dry until the next day. They are individual, lightweight and very important to my well being. They are not interchangeable. They have helped feel less spasms in my right leg. I feel that my leg is less contracted. I am able to use foot rest indoors on my wheelchair now. The Wheelchair Service finally got it that I needed to remove these. I can lift them now, they are light. They have also a heal strap. I got this after pestering and contacting the company that sold it to the NHS.  I know I will be able to remove and replace my feet on my foot rest easily. It has become very "normal". I even followed some advice regarding the angle of my knee to have a good posture. I have less fatigue and no cramps on the right leg.

So, I think that podiatry care should be automatically included in any care plan for a person with many symptoms of Multiple Sclerosis. Why did it take me so long to get to this result? How many people have the same problem? Why did I have six toe nail infections in two years?

Wednesday, 2 November 2016

Having MS and finding it hard to go to work

This morning I found this very interesting in the Society Guardian. Disabled people have every reason to be sceptical about new Tory work plans by Frances Ryan.

I think that you should read it attentively! When I still had a job I was told I did not meet the criteria to get help. Yet, I took longer and fell a lot getting dressed. I could not shut the front door and lock the door without falling. I fell on my way to the car. 

I have a strong suspicion that things have become harder and "assessments" more heartless especially for People with Multiple Sclerosis or MS. I have had to introduce dirt during polite assessments...When I say dirt I mean it! Continence is something that people with MS try to keep quiet about. I went to work with a change of clothes. I tried to stay in work although I felt discarded in any present or future plan of the school.
Things are becoming harder.

It is very difficult to recruit staff to work the social care hours needed to help you go to work and contribute as you feel you should.

I do like this article. It has a good picture too! The best quote is:

After all, a job is little good if your local council has cut the personal assistant who helps you get dressed in the morning or the DWP have removed your mobility car. While they’re at it, they could push funding into the Access to Work scheme, rather than continuing to gut it.
Thanks Frances Ryan for seeing my thoughts.