standup4MS: my mobility rehab

easyfundraising and MS charity

2012-01-27T12:55:00.000Z

As a trustee of the charity MS Research Training and Education (and somebody who has MS) I'm helping to raise money whenever I shop online because I want more research and more information about MS. Could you do the same? Fundraising while shopping costs the purchaser nothing but can raise vital funds for the charity. It's very simple - just visit http://www.easyfundraising.org.uk/causes/msresearch/ to register and shop with over 2000 well known retailers like Amazon, Argos, M&S, eBand many more. Whenever I buy something, the retailer makes a donation to MS Research Training and Education. They've helped raise over £2,000,000 for charities already so it really does work.I'd be really grateful if you could use easyfundraising too. It won't cost you a penny extra to shop through easyfundraising and you can even save money with special offers and voucher codes.Plus, if you register before 1st February you'll automatically receive one entry into the January competition to win £250 to spend with Matalan and a £250 donation to MS Research!So please help us find the vital funds for more important research and take a look at easyfundraising today - http://www.easyfundraising.org.uk/causes/msresearch/ThanksLaurence Trustee and Webmaster MS Research.

Response to an invitation

2012-01-10T18:03:00.000Z

I received an invitation to an Equality Opportunity Meeting for
Equality B&NES
c/o Bath People First

Dear Will,

Happy New Year! Having a major Personal Assistant (PA) crisis:one sick (major family issues, stress and now gall bladder trouble) anothersick and having a minor operation that will keep her inactive for 2 weeks, andthe others set in their other jobs with family commitments...and I nearlyforgot one new one with itchy feet as there are not enough hours...That meansit truly can get better!

How did I get into this?

Once upon a time Social services of Bath and North East Somerset (BaNES) started my personal budget earlybecause it was convenient to some head of department to have less cases openedthat appeared to be stagnant with the Shaw Trust that did not do as much aswhat it said on the box. My staff was amassed in a hurry and composed of peopleworking somewhere else. I was not given enough money to do anything and havingrecruited someone that I could not pay.

Social services took note of the problem but did nothing about it. ShawTrust did nothing about social services doing nothing. The Vanguard team put itright and I got my personal budget recalculated. I changed to Enable payrolland care support agency to Phoenix SW. I employed more assistants but one hasmoved because she bought a house in North Devon and I found jobs to apply forher there.
Another one started nearly a year ago; she had been depressed but got moreconfident and accompanied me for my first week long holiday. Unfortunately, shehas a major family problem and a health one that means that she will not returnfor long.

I just got better and established a verygood routine that means the care when it is regular has the result of making meprogress and be mobile. When I am mobile I become healthier and more active andcheerful...I need regular exercise for the physiotherapy following botulinumtoxin injections to help control spasms in my legs (bad wheelchair, poor footcare and bad posture). I re advertised from19th January and got Phoenix SW tocome tomorrow. My husband is in full time employment and we find thathaving me out of bed at 7am is good for him to go to work. The body is regular anddoes not stop during the weekend.
Care agencies are far too limiting and expensive...that is nothing...theyare also very poorly trained with constant staffing problems. Social services close cases and there is no wayto advertise centrally and organise local pool of carers. It is down tothe individual to manage on their own. I do not want to lose my mobility andindependence. I need regular assisted exercises only available on personalbudget.

So Will I have a major problem that willkeep me busy for a long time!

Happy New Year

2012-01-02T11:37:00.001Z

New year, let's see what is going to happen...Most people on the PAnet Empoyer panel are worried :

I dread to welcome the next social worker to start my care review. Fancy that, they close the case and reopen it when it suits them.

I am prepared and will argue my case. They will get irony to start with and mockery "claw-back" and "contingencies" are their favourite words to worry the person who receives care with a Personal Budget. To say these properly you must sound like a shivering magpie!

I had sleepless nights and poor breathing because of this. I had to go to the sleep clinic and I need to sleep with a Continuous Positive Airways Pressure (CPAP) mask. Not so deprived of oxygen now, I have rosy cheeks and less fatigue.

The motto of my Bath and North East Somerset (BaNES) council is"working together for health and well-being"...which I like them to repeat clearly and enunciate carefully as many times as I can.

This time it will be a meeting with other people who have seen my progress and know what was involved to realize this. They know that it was meanly allocated and how depressed it made me.

Thanks for mentioning the RAS.

I have downloaded some pdf info:

http://www.manchester.gov.uk/downloads/file/11170/resource_allocation_system_policy

Making it real...Will it be in 2012 one wonders?

2011-12-12T11:50:00.000Z

My wish for Christmas is not little this year. I WANT nothing cute but better care management from local councils all over the UK. There is a great difference and the people who receive care are short changed and bullied into accepting second rate. This can lead to some cases of worsening of conditions which are all different like Multiple Scclerosis (MS).

Making it Real: New citizen-led approach for councils, organisations and people to check progress with personalisation and community-based support

Added: 19/10/2011
Updated: 20/10/2011

Making it Real - Marking Progress towards personalised, community-based support is a set of statements from people who use services and carers which set out what they would expect, see and experience if personalisation is working well in an organisation. These statements are then set against key elements that would need to be in place within an organisation to make personalisation possible.

The markers will help organisations involved in commissioning and delivering care and support- from councils to providers of in-home, residential or nursing care - to look at their current practice, identify areas that need improvement and develop plans for change.

Making it Real has the support of the Association of Directors of Adult Social Services (ADASS), national provider bodies, the Care Quality Commission and the Department of Health. Vitally, the markers have been developed by people who use social care and family carers who are part of the National Coproduction Advisory Group - representing a very wide range of groups and organisations.

How will Making it Real be used?

The organisations that have signed up to Think Local, Act Personal will use Making it Real to work with people using social care and carers to check their progress and guide further action in transforming their supports and services to get people more choice and control.

We want Making it Real to be available to everyone committed to achieving progress with personalisation.

Councils and provider organisations can look at their current practice, identify areas for change and develop plans for change.

Who can use it?

Any organisation commissioning or providing care and support including councils, providers of home based support and those providing residential and nursing care.

It can also be used by people who use services and cares to check how well their aspirations are being met. Ideally people and organisations will use them jointly

When will it be available?

You can start using Making it Real immediately to build the markers into your work plans and reviews.

In early 2012, everyone involved in care and support will be able to go to our website to declare their commitment to use Making it Real as a way of showing they are committed to personalisation.

If they do this, they will agree to publicly share the actions they will take to make towards achieving the goals in Making it Real. This will be web-based.

Between now and then, there will be a short period of testing with different kinds of organisations to find a way of making the reporting work in an easy and simple way for all groups and organisations.

You can also let us know through an expression of interest via thinklocalactpersonal@scie.org.uk that you would like to sign up in early 2012.

How will we report on our progress with Making it Real?

We are testing out an approach that will allow us to assess the quality of an organisations declaration and award the use of a TLAP logo.

Organisations will self-report six monthly on their top three priorities. We hope this will be web-based.

There will be a nationally-led citizen survey which will allow citizens to feedback on progress against markers.

Do we have to meet every marker in Making it Real?

No, not all markers will be relevant to all, so your organisation will be able to sign up to the ones most meaningful for you and the people who use your support and your organisation as a whole

Is this just another performance management tool?

No, this isn't. It is a voluntary movement for change and a way for generating enthusiasm for getting on with personalisation.

This is the sector taking ownership and responsibility for personalisation.

We think councils and other organisations will want to sign up to Making it Real as a way of helping them to check and build on progress with personalisation.

This will also be away for them to let other know how they are doing - especially their local community and the people they serve.

How does this link performance frameworks and standards like those of the CQC?

The Care Quality Commission are mapping these markers to see how they fit with essential standards of safety and quality.

The Association of Directors of Adult Social Services (ADASS) have endorsed Making it Real as part of their membership of Think Local, Act Personal Partnership. They will be encouraging their members to make good use of Making it Real in their work.
As part of the Zero Based Review of performance data being undertaken to reduce burdens on councils, a working group that is specifically focusing on personalisation will be informed by Making it Real.

Strong connections are being made with the work of the Excellence in Councils Adult Social Care Board, which is leading support to councils and a joint Department of Health, ADASS and Local Government Group work on personal outcomes.

The Department of Health have also said that Making it Real will complement and inform the development of their outcomes framework - ensuring that citizen experience and local leadership is central.

Documents

Making it Real: Marking progress towards personalised, community based support (pdf - 834Kb)

A STUDY DAY AT THE HOLBURNE MUSEUM

2011-12-05T12:05:00.001Z

On Monday 14th November, I took a day of holiday away from the worries of Personal Budget business. I have been looking for a PA to consolidate the team since the beginning of
September…I decided to complete the visit I had made last month, with Sandra my main PA, to view the exhibition on “Gainsborough Landscapes: Themes and Variations” curated by Dr Susan Sloman with a Study day introducing some experts on the period.

I had thought that my first ever visit as a wheelchair user with much needed assistance had gone on very smoothly. I had a heritage card as a resident of Bath and North East Somerset which availed me with a reduced concession rate and Sandra as my PA was with a free pass. It was a first for both of us as well as she had never visited the Holburne Museum before.

We not only were favourably impressed by my first use of my heritage card on entering this magnificent building but equally by the visitor facilities. All of this made both visits memorable; so much that I urge all to make a visit whilst the exhibition “Gainsborough Landscapes: Themes and Variations” lasts; so all could see what I am going on about.

After 3 years of closure the Holburne has re-opened having joined the 21th century at last! Before the re-opening, I would not have been able to visit this magnificent establishment as a wheelchair user; so I can only assume that it was not accessible or not suitable without assistance. I never tried before, not wanting the fatigue and frustration…

Now in the new extension there is a capacious lift with a very inspiring view of the garden which makes the visit definitely worthwhile especially viewing some rare landscapes of Gainsborough who is better known for the portraits of well-to-do people! The trees were striking and firmly printed in my eyes. I got back home and painted the following day and I completed a view of the Forest of Dean started in 2006. As my mobility diminished because of the progression of Multiple Sclerosis (MS), I not only felt cut out of any involvement in the local community but I was not able to carry on with my hobby which is painting. I could never finish this painting, which was large and needed care as my medium was pastel.

Any notion of cognitive and cultural rehabilitation does not figure in a care plan written
by social services.

After a 3 year period of illness and struggling with the abominable
mismanagement of my transition from direct control of my care by Social
Services of Bath and North East Somerset (BaNES) to the empowering of
managing a Personal Budget for my care; I decided to include some visual art in
my life. Each of this type of visit will be a holiday! It is essential to include
cognitive and cultural rehabilitation of MS in all care plans as “A sound mind in a
sound body” is what people should desire in life.

We did enjoy the catering which also provided for the lunch during the study day.
Both occasions had very good food which is just to my taste and to Sandra’s. I
seem to be going on, but some accommodating area with tables was set aside
with a view of the park to make our stand-up buffet lunch possible. How very
thoughtful!

All visitors would agree that the attention to the washroom is very important. We
were both very impressed by the disabled toilet layout which was in full
compliance with both the Building Regulations Approved Document M 2004
edition and British Standard BS8300 for Wheelchair accessibility. Oh dear, my
pet hate is to find one that is not! I have taken a BaNES councillor to the loos
before! There is no need for that at the Holburne Museum! The highlight was to
find a Dyson airblade well positioned to dry my hands, all very civilized. It saves
waste, carbon and time. So there was more time left for art.

Nothing was spared to make art accessible to all at the Holburne Museum! We
are grateful.

24 hours rates

2011-11-19T11:42:00.004Z

Posted on Employers PAnet forum on Employers-PANet but might be useful to all having Personal Assistants (PAs) on Personal Budget (PB):

sleep in night - Standard: £91.28 (net pay a day) X 1.3 = £118.66 hidden cost
including Statutory Holiday Pay (shp) to the PA and National Insurance (NI) and tax that you pay HMRC
£91.28 + £27.38 = £118.66 (must be in PB account for each standard sleep in night)
on the pay slip each £91.28 will be needing shp £91.28 X 12.07% = £11.02 for casual part time work;

a payroll service connected to Her Majesty's Revenue and Customs (HMRC) will produce a sheet of dues at the end of each quarter and voilà!

I can do the same with:

24h sleep in higher need £136.62
24h waking night standard care £179.70
24h waking night higher care £215.65.

I follow roughly the Direct Payment Rates from April 2009 from Bath and North East Somerset council.

X 1.3 is the rate for finding hidden costs

and 12.07% the way to find shp of any time worked by a PA.

These two rules gave me nightmares until I found how simple it was. The Shaw Trust was not helpful but Phoenix SW was!

Two PAs did not get fair pay because of that last year.

I hope it helps, best wishes!

Proposed Personal Independence Payment

2011-11-18T17:01:00.000Z

Here again I have come across this which I think I had already posted on posterous now on Employers-PANet

Good Afternoon

We thought some of our members may be interested in commenting on the proposed assessment criteria for the Personal Independence Payment which will replace DLA (Disability Living Allowance). Please send your comments to the contact details at the end of the email.

From the Department for Works and Pensions website regarding the proposed Personal Independence Payment which will replace DLA.
“From 2013 the Government is proposing to introduce a new benefit called Personal Independence Payment for eligible working age people aged 16 to 64 to replace Disability Living Allowance (DLA).
What the change meansFrom April 2013 to March 2016 everyone aged 16 to 64 receiving DLA will be reassessed to see whether they are entitled to the new Personal Independence Payment.
People entitled to Personal Independence Payment will have their claims smoothly transferred over and their DLA will stop.
Those not found to be entitled to Personal Independence Payment will be informed and their DLA will stop. They may be able to claim other benefits.
There are no current plans to replace DLA with Personal Independence Payment for children aged under 16 and people over the age of 65 who are already receiving DLA.
For further information
http://www.dwp.gov.uk/policy/disability/personal-independence-payment/
Consultations are taking place on the 2nd Draft (see the website – link above) of the proposed Assessment criteria and they are inviting comments via
Email: pip.assessment@dwp.gsi.gov.uk <mailto:pip.assessment@dwp.gsi.gov.uk>

or

PIP Assessment Development Team
Department for Work and Pensions
2nd floor, area B
Caxton House
Tothill Street
London SW1H 9NA

Now some people just said:

It is of course profoundly depressing to think of hard lives being made harder. As if the very small numbers of fake claimants can't get round this.

Heaven help all of us.

and that is very sad!

Health related trips on a Personal Budget

2011-11-11T17:42:00.005Z

This has been posted to Employers PANet
Hi All, if I may barge in re"I have been told that I can not use any DP for appointments and have to have hospital transport the fact is i need a PA with me"
I have been allocated 1 hour/w for local community blabla
I have had more than I hour worth per week including getting to the surgery with a PA to see a doctor; flu jabs; visits to 2 neurologists; physotherapists; wheelchair fitting. Most of my trips incur hoisting in and out of car, driving, care, food & drink, driving back, exercises and care. It can be up to 5 hours.
It is not a narrow minded system of accounting from people in warm offices with no idea of what I need to do to live and remain mobile that is going to hold me back. With all the extra health related visits that I have had; I have made a massive amount of progress and my Personal Care Assistants (PA). As love to see that and they will say that I blossomed.
I keep appraising them each time for their work of nurturing. It has been a success. I am pleased to say that the PB has been well used as I an well.
I am not sure that I would be writing this cheerfully if I had been following all what they said.
We have said yesterday that we were waiting the moment when the blessed support plan manager want to come and argue the fact that I should not have paid a bonus last year (not having any money due to their incompetence in my PB; jury service of a PA; sore back; children sickness).
How efficient are "they" one year on? That is the social services...The Finance Department of Bath and North East Somerset (BaNES) picked on my last quarterly report. Has the support plan manager been in touch? NO. I plan to carry on with the health visits.
Cheers,

Personal Assistants for care - PAs are not easy to find

2011-11-06T17:50:00.005Z

Local care Ad

This week the hunt for a Personal Care Assistant has reached crescendo. I have issued a P45 to one relocating to North Devon. I have placed an advertisement in a local journal "TheWeekIn" and I have also paid for that.

This will go on for 6 weeks. Personal Care is not easy to advertise. I find that there is very little help locally in Bath and North east Somerset (BaNES) where social services have proven so far to be unaware of the situation.

Last year, my then social worker in a very high pitched and lofty voice had closed my case even when I was saying that there was no money in my Personal Budget to pay for my staff.

I wrote an email to the Lead of team for what the council described the folks who did not live in Bath. They call my area "Wansdyke" that is the old administrative area and also the name of the constituency in parliament.

It does not mean that it is any better. Last year I had been able to recruit four PAs but was only able to pay one. I put in money to top up the account even if they say not to do this. I used to tell the three on the time table that I was inventing money at each time I was calculating the wages.

They covered as well as they could for sickness of children and jury service; even better than a care agency. My pleas were finally heard and I was put in contact with the "Vanguard" team that was assessing Social care in Banes. Had they kept me last on their list of jobs to do?

I was getting very tired as I could not sleep a wink. I spoke to the two ladies that came for two hours and again a week later for two hours. I felt all the time that they were going to stop my Personal Budget and that I would have to get a care company to look after me.

During the second or third visit it was mentioned that I could pay my staff what I wanted including a Christmas Bonus if I had wanted to. So, I did just that to the three on the timetable as they had been good to work for me with no holiday pay for some of them and had covered the work.

Finally, I was given some money backdated to only mid November and told that I would be able to repay myself gradually. I also gave some hours to my fourth PA who I had found via the Jobcentre. We coped with the snow. We coped with the care company CareWatch even when they could not send anyone because of the snow. We cleaned the floor after the doormat was avoided. We called this "Pole vaulting". We did not complain when the door key was lost. We changed the lock. We again not complained when we had to change the key safe; we just claimed VAT back. We were told that we were not able to claim any of that from the Personal Budget.

I found a more helpful company to advise me with staffing and administering the PB called Phoenix. Yet it does not have a bank of PAs of any substance or they want all the work which is allocated. It is better than the Shaw Trust which was as it says doing this

Direct Payments Support - Information, support and guidance on all aspects of receiving and managing a direct payment.
and
Champion Service Users - We actively encourage people who have experience of receiving a direct payment to support us with delivering new services, meeting, presentations, home visits and talking to people who are interested in the service.

My experience is that Phoenix has advised regarding Statutory Holiday Pay (SHP), found a way around the sudden unavailability of Criminal Record Bureau (CRB) checks to individuals who are receiving Personal Budget for social care, and helped me understand the hidden costs of employing PAs. They have at no time said that I was demanding too much....

After 21st July 2010 when I was told I was asking for too much help by the Shaw Trust, I contacted them three times.

First to ask for a CRB check on the PA that I had found via the Jobcentre myself as there robust bank of PA was not substantial. The second time was to ask for a contract for my existing PAs. Then the third time was to ask about "contingencies" that where never there as I had to contribute a lot to keep the payroll going.

Oh dear, I was demanding as I called more to find out about the tax that I was going to pay for my quarterly dues to HMRC. I had paid some staff for a sleeping night of care that is £37.98 and I wanted to know what was the SHP accrued for that. No advice came that was anywhere near what it is: 12.07% of £37.98. So far, I got away with it but I know that my team knows what to expect after my switch to Phoenix...
I better stop today as my fingers find this PA hunt tiring.

Watch this space Standup4MS is taking steps!

2011-10-17T18:06:00.000+01:00

I am not yet able to blog about my Cricket Panache standing frame...Why? My main carer was sick over the weekend. I did not find it easy to get cover for all her calls. I need to think around this problem.

First of all, I not only want one more Personal Assistant for Care (PA) but I need to find one pretty fast! So, I am thinking to make the job attractive by making sure that they are going to get some professional training.

I joined Skills for Care that supports employers (organisations and people who 'directly' employ PAs) develop the knowledge and skills of nearly 1.56 million workers and support the sector to plan for the future using data from the National Minimum Data Set for Social Care (NMDS-SC).

They publish Taking Steps - a guide to workforce planning for providers of adult social care which is also available to download.

It has an amazing amount of information that would have helped me at the beginning when the Shaw Trust had me as a client. They had helped partly but very worryingly had not given me a copy of any contract of employment for my PAs. This was critical as I was going to spend two nights away with a PA. I managed to get hold of one template from one of their admin assistants and remember clearly signing the contract before being hoisted into the car! It is all in the past after many sleepless nights, I can say that I am managing better without the hindrance of the Shaw Trust. I have issued contracts and was able to pay Statutory Holiday pay (SHP) for all the care service received this year especially when it is for a 24h rate or a night shift with the help of Phoenix South West.

Furthering progress with foot rocker

2011-10-08T13:09:00.000+01:00

Last week went on with me standing each time at least half a minute longer and adding some stepping. I also got myself a Fellowes foot rest rocker to place under my desk. I did this to try to improve the blood circulation in my legs.It came from Euroffice delivered the next day.

Euroffice is good for home shopping online. I found them on Easyfundraising whick gave £1 to MS Research charity that I support most of my waking life!

So there I am standing Using the Cricket Panache Standing Frame, feeling good and raising funds for the charity MS Research training and Education thereby making the feel good factor go further!

Next will be no doubt an article about the Cricket Panache Standing Frame with a video attached to show the progress of my mobility recovery which only progresses with constant home physiotherapy exercises designed for Multiple Sclerosis (MS) treatment with Botulinum Toxin (Botox).

Loads of progress

2011-10-02T17:28:00.000+01:00

Loads to say, a lot of progress. I stood a very long time and a few times. Then I managed to rest when my PA Sandra Coles was rushing around doing other things.

That was not going to be enough, I was able to kneel for the first time in ages with a little help pulling me up on either side of my hips...and with an extra little nudge to the right knee at the start I was able to crawl up the bed.

That was amazing. Sorry no photo but a video of my standing with the Cricket Panache Standing Frame when I get some time to blog, :-)

So, the best bit about Personal Budget for care is not that there is no blue uniform with heavy duty rules and regulations near me, bursting into my life more or less when they are ready. It is that it is personal and my goal of regaining mobility is now very probable.

The Low Review: Personal Mobility in State-Funded Residential Care

2011-08-07T12:53:00.000+01:00

This is my response to a very provocative comment on The Low Review: Personal Mobility in State-Funded Residential Care website:

If they are in residential care they do not need mobility payments. If there partners or family wish to visit them they should fund this themselves...Posted by a Richard on July 18, 2011 at 4:31 pm

Dash it! I could not help it:

Ah, Richard I wish you good health and that you enjoy all the mobility that you still have for many years and the same for your family as I fear that you may not have the strength necessary to be able to cope when it will be suddenly withdrawn from you! My mobility is gradually diminishing as my Multiple Sclerosis (MS) progresses. I know that it is very possible that I will be in residential care. I spent many years apparently not qualifying for the care necessary to help me go out of my house even if I had a motability car. After a shocking 15 weeks in hospital and a very poor understanding of MS from medical and caring staff my mobility deterioration progressed and I have for the last 3 years battled to prove “them” wrong to regain some mobility and recently I have been able to use a modified family car to get someone to drive me to the gym and I am buying a wheelchair with added power pack which I will have to maintain regularly with my allowance and a standing frame to help strengthen my back which got weakened by my stay in hospital because I very much suspect that it will be deemed “unnecessary” as it is an expense that my local authority will not afford…I imagine that I would need to stand and move in residential care! Read my blog standup4ms.blogspot.com

Received questionnaire on limited capability to work

2011-06-25T18:11:00.000+01:00

This morning I received the questionnaire on limited capbility to work I wonder if this questionnaire is seeking for mass voluntary colosectomy or ignoring that genuinely dropped kerbs are not universal. I found this interesting on the Newcastle City Council website.

Updated November 2010, March 2011 and June 2011.
People claiming old incapacity benefits are being reassessed under the ESA work capability assessment between now and April 2014.

and in particular this following section:

Limited capability for work physical health test
1.
Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid can reasonable be used.

e)
None of the above
0
2.
Standing and sitting

a)

Cannot move between one seated position and another seated position located next to one another without receiving physical assistance from another person
15
b)
Cannot, for the majority of the time, remain at a work station, either:
standing unassisted by another person (even if free to move around); or
sitting (even in an adjustable chair)
for more than 30 minutes, before needing to move away in order to avoid significant discomfort or exhaustion.
9
c)
Cannot, for the majority of the time, remain at a work station, either:
standing unassisted by another person (even if free to move around); or
sitting (even in an adjustable chair)
for more than an hour before needing to move away in order to avoid significant discomfort or exhaustion.
6
d)
None of the above apply
0
3.
Reaching

a)
Cannot raise either arm as if to put something in the top pocket of a coat or jacket.
15
b)
Cannot raise either arm to top of head as if to put on a hat.
9
c)
Cannot raise either arm above head height as if to reach for something.
6
d)
None of the above apply
0
4.
Picking up and moving or transferring by the use of upper body and arms

a)
Cannot pick up and move a 0.5 litre carton full of liquid.
15
b)
Cannot pick up and move a one litre carton full of liquid.
9
c)
Cannot transfer a light but bulky object such as an empty cardboard box.
6
d)
None of the above apply
0
Go to Top
5.
Manual dexterity

a)

Cannot either:
press a button, such as a telephone keypad; or
turn the pages of a book with either hand
15
b)
Cannot pick up a £1 coin or equivalent with either hand.
15
c)
Cannot use a pen or pencil to make a meaningful mark.
9
d)
Cannot use a suitable keyboard or mouse.
9
e)
None of the above apply
0
6.
Making self understood through speaking, writing, typing or other means normally used; unaided by another person

a)
Cannot convey a simple message, such as the presence of a hazard.
15
b)
Has significant difficulty conveying a simple message to strangers.
15
c)
Has some difficulty conveying a simple message to strangers.
6
d)
None of the above apply.
0
7.
Understanding communication by both verbal means (such as hearing or lip reading) and non-verbal means (such as reading 16 point print) using any aid if reasonably used; unaided by another person

a)
Cannot understand a simple message due to sensory impairment, such as the location of a fire escape.
15
b)
Has significant difficulty understanding a simple message from a stranger due to sensory impairment.
15
c)
Has some difficulty understanding a simple message from a stranger due to sensory impairment.
6
d)
None of the above apply
0
8.
Navigation and maintaining safety, using a guide dog or other aid if normally used.

a)
Unable to navigate around familiar surroundings, without being accompanied by another person, due to sensory impairment.
15
b)
Cannot safely complete a potentially hazardous task such as crossing the road, without being accompanied by another person, due to sensory impairment.
15
c)
Unable to navigate around unfamiliar surroundings, without being accompanied by another person, due to sensory impairment.
9
d)
None of the above apply
0
9.
Absence or loss of control leading to extensive evacuation of the bowel and/ or bladder, despite the presence of any aids or adaptations normally used.

a)
At least once a month experiences
loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or
substantial leakage of the contents of a collecting device sufficient to require the individual to clean themselves and change clothing
15
b)
At risk of loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder, sufficient to require cleaning and a change in clothing, if not able to reach a toilet quickly.
6
c)
None of the above apply
0
10.
Consciousness during waking moments

a)
At least once a week, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration.
15
b)
At least once a month, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration.
6
c)
None of the above apply
0
a)
Cannot either
mobilise more than 50 meters on level ground without stopping in order to avoid significant discomfort or exhaustion; or
repeatedly mobilise 50 meters within a reasonable timescale because of significant discomfort or exhaustion.
15
b)
Cannot mount or descend two steps unaided by another person even with the support of a handrail.
9
c)
Cannot either
mobilise more than 100 meters on level ground without stopping in order to avoid significant discomfort or exhaustion; or
repeatedly mobilise 100 meters within a reasonable timescale because of significant discomfort or exhaustion.
9
d)
Cannot either
Mobilise more than 200 meters on level ground without stopping in order to avoid significant discomfort or exhaustion; or
repeatedly mobilise 200 meters within a reasonable timescale because of significant discomfort or exhaustion.

Limited capability for work physical health test
1.	Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid can reasonable be used.
e)	None of the above	0
2.	Standing and sitting
a)	Cannot move between one seated position and another seated position located next to one another without receiving physical assistance from another person	15
b)	Cannot, for the majority of the time, remain at a work station, either: standing unassisted by another person (even if free to move around); or sitting (even in an adjustable chair) for more than 30 minutes, before needing to move away in order to avoid significant discomfort or exhaustion.	9
c)	Cannot, for the majority of the time, remain at a work station, either: standing unassisted by another person (even if free to move around); or sitting (even in an adjustable chair) for more than an hour before needing to move away in order to avoid significant discomfort or exhaustion.	6
d)	None of the above apply	0
3.	Reaching
a)	Cannot raise either arm as if to put something in the top pocket of a coat or jacket.	15
b)	Cannot raise either arm to top of head as if to put on a hat.	9
c)	Cannot raise either arm above head height as if to reach for something.	6
d)	None of the above apply	0
4.	Picking up and moving or transferring by the use of upper body and arms
a)	Cannot pick up and move a 0.5 litre carton full of liquid.	15
b)	Cannot pick up and move a one litre carton full of liquid.	9
c)	Cannot transfer a light but bulky object such as an empty cardboard box.	6
d)	None of the above apply	0
	Go to Top
5.	Manual dexterity
a)	Cannot either: press a button, such as a telephone keypad; or turn the pages of a book with either hand	15
b)	Cannot pick up a £1 coin or equivalent with either hand.	15
c)	Cannot use a pen or pencil to make a meaningful mark.	9
d)	Cannot use a suitable keyboard or mouse.	9
e)	None of the above apply	0
6.	Making self understood through speaking, writing, typing or other means normally used; unaided by another person
a)	Cannot convey a simple message, such as the presence of a hazard.	15
b)	Has significant difficulty conveying a simple message to strangers.	15
c)	Has some difficulty conveying a simple message to strangers.	6
d)	None of the above apply.	0
7.	Understanding communication by both verbal means (such as hearing or lip reading) and non-verbal means (such as reading 16 point print) using any aid if reasonably used; unaided by another person
a)	Cannot understand a simple message due to sensory impairment, such as the location of a fire escape.	15
b)	Has significant difficulty understanding a simple message from a stranger due to sensory impairment.	15
c)	Has some difficulty understanding a simple message from a stranger due to sensory impairment.	6
d)	None of the above apply	0
8.	Navigation and maintaining safety, using a guide dog or other aid if normally used.
a)	Unable to navigate around familiar surroundings, without being accompanied by another person, due to sensory impairment.	15
b)	Cannot safely complete a potentially hazardous task such as crossing the road, without being accompanied by another person, due to sensory impairment.	15
c)	Unable to navigate around unfamiliar surroundings, without being accompanied by another person, due to sensory impairment.	9
d)	None of the above apply	0
9.	Absence or loss of control leading to extensive evacuation of the bowel and/ or bladder, despite the presence of any aids or adaptations normally used.
a)	At least once a month experiences loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or substantial leakage of the contents of a collecting device sufficient to require the individual to clean themselves and change clothing	15
b)	At risk of loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder, sufficient to require cleaning and a change in clothing, if not able to reach a toilet quickly.	6
c)	None of the above apply	0
10.	Consciousness during waking moments
a)	At least once a week, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration.	15
b)	At least once a month, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration.	6
c)	None of the above apply	0
a)	Cannot either mobilise more than 50 meters on level ground without stopping in order to avoid significant discomfort or exhaustion; or repeatedly mobilise 50 meters within a reasonable timescale because of significant discomfort or exhaustion.	15
b)	Cannot mount or descend two steps unaided by another person even with the support of a handrail.	9
c)	Cannot either mobilise more than 100 meters on level ground without stopping in order to avoid significant discomfort or exhaustion; or repeatedly mobilise 100 meters within a reasonable timescale because of significant discomfort or exhaustion.	9
d)	Cannot either Mobilise more than 200 meters on level ground without stopping in order to avoid significant discomfort or exhaustion; or repeatedly mobilise 200 meters within a reasonable timescale because of significant discomfort or exhaustion.

First letter from DWP received

2011-06-20T17:53:00.000+01:00

Last week, I received an amazing letter from the Department of Works and Pensions. They were quoting the wrong phone number writing at the same time that they would use it to call me back...I phoned and corrected them. I was vetted for that. I received a call from them just when I was resting on my back and exercising gently for my legs strength.
Same week, in the Guardian was published an alarming article written by Allegra Stratton. Tory MP Philip Davies: disabled people could work for less pay...One thought instantly of the one legged man going for an interview:

Philip Davies, Tory MP for Shpley, told the Commons: "If an employer is looking at two candidates, one who has got disabilities and one who hasn't, and they have got to pay them both the same rate, I invite you to guess which one the employer is more likely to take on."

Reading the criteria for being "sent back to work":

able to walk 30m. unaided
lifting a 500ml carton of drink with each hand
putting food in one's mouth without help

I also worry that serving pints of drinks would be thought a good career move, it does not stipulate that you need to be able to lift a carton repeatedly in the criteria or walk with it to place it somewhere in the 30m. radius...We could always close the pub after spilling our first pint. How popular will that be?

We will have to see, I am typing this using 4 fingers as usual, my skills are widening...serving one pint, closing early and blogging about it! It is not going to get any better.

Another week, another trip to the gym..

2011-04-05T18:05:00.000+01:00

Latissimus dorsi

Oh, I found my latissimus dorsi. It woke up at the University of Bath gym in a class organised by @MSSocietyuk Bath branch. I had not felt it was doing anything there for three whole years...

The Latissimus dorsi muscle is one of the largest in the body. It is a powerful extensor muscle of the arm and is used extensively in chinning and climbing. They are commonly known at the lats.

That's what it does:

Extension
Internal rotation
Adduction

I have no immediate plans of chinning and climbing...but the ordinary daily uses:

Pushing on the arms of a chair when standing up

are what I have in mind...so I could stand more confidently in and out of my blessed calamity pot de chambre of a wheelchair. This is ideal for my emancipation from the nightmare of three years ago!

Sure it feels numb and a cup of tea does not make it better. I added a slice of lemon zesty iced Madeira cake and a nice little cream toffee...It is still numb.

Why complain? There no gain without pain. I am feeling one example. I'll keep you posted :-)
****
After a night, I am already looking of what I could do at home: lat pull down, sounds nice...

Wheelchair saga or the chariot war goes on...

2011-03-05T17:09:00.000Z

Going to wheelchair centre on 19/04/2011, about time! Cannot believe it is taking so long.

Invacare 2000

The chair is painful and negates most physio progress! Before, on 16/03/2011, there is a workshop of the NHS South West Review of the Wheelchair Service. A day of back breaking flipchart merry-go-round! Plan B: throw a few lines in and depart after lunch? I suppose that my PA could be a participant too as she is the one who sees quite a lot of problems with it. So, they would get a fair participation from us and let us go half-way, what do you think? :-)
It is an Invacare 2000+. It is designed to life easier. However, it has been another story. It is very cheap, I found a similar model. It sells at about £300. I was assured that the back needed to be changed but it projects me forwards! I contacted the manufacturer to get an idea that individual foot straps were available. I got them delivered just before Xmas 2009. I got a plastic wheel model which has wheels removable. I had to take some medication that made me very soft and sleepy and I did not feel confident on the chair. I was worried I might fall off. So, I take a minimum of medication and spend a lot of time with a table across the front of me. That way I feel secure. I went to a meeting and the reputation of the wheelchair make had preceded me. It was described by a four letter word. Blunt but accurate! Nobody would want to spend their waking hours on anything called like that!

Another few months of recovery...

2010-11-22T16:51:00.000Z

This recovery took a bit long. Many things got in the way...Got 6 toe infections in two years. The spasms got worse. The medication and care given were awful. The best thing which is not perfect is having better control on the care with a personal budget. It is far from being perfect. There is no freedom inworrying constantly about the bank balance.

I will have a very important support plan review on this coming Thursday. Here is what I posted on Twitlonger:

@hellsbells265 @mssocietyuk After a 2 hour long meeting with the Vanguard Project team of Bath and North East Somerset social services who are making a survey of the service users’ perceptions of what social care is provided especially the "personal budget". I had warned them on the phone that it was not going to be favourable. I was prepared: having a good collection of press cuttings and government statements about liberating the people in need of care by giving them choice! I made a spreadsheet from hell with all my PAs hours worked, wages, statutory holiday pay, balance before wages and projected total of wages per month. I need to stress that I am a linguist and not an accountant. There are surprises; the projected total of wages is still a mystery. This month one of my PAs has earned more so she has to pay NI and income tax. I imagine that this will have to be paid by me at some point. I am conscious that earlier would be best considering our national deficit and not wanting to be keeping some funds too long that would do well to the Treasury. I need to find out from the support and payroll agency tomorrow when the accountant who has always given a helpful answer will be back. So as you see it is no liberation and choice that is afforded by "Direct Payments". It is more like offloading responsibilities. I earned an accolade from my PA who wrote a bullet list (for the meeting) on the back of an envelope under dictation when I was in the shower...She said I sounded more like Mrs Thatcher. Wow, it left me speechless for a time before I decided that it was meant as a compliment! I received a thorough categorised answer from the Vanguard team and they asked to be back to review my support plan...They "will go through the Personal Budgets process with you and discuss possible ways of making it easier, more transparent and more flexible for all service users." Return match on Thursday :-)

Mobility of PwMS held even with #ukheat

2009-07-02T10:11:00.000+01:00

It is simple to look at this in figures: 15 weeks in hospital for a PwMS and 13 months later doing my own physiotherapy rehab; my mobility has reached the point the medical and clinical staff of the NHS would have wanted me to be at! I am very pleased to say that they were wrong about Secondary Progressive Multiple Sclerosis (SPMS).

The fever I had ruined my mobility not the UK heatwave (#ukheat) as the Met Office describes it!

I can stand and transfer seats. I have managed this at 25^oC, yesterday near Bristol in the UK. It was 30^oC outside and Andy Murray might have been battling with a higher temperature in Wimbledon...It was important to remain in control of the footwork. I thought of the right position of my shoulders, hips and feet on the ground. Balancing my weight and reaching out at right time...

I held strong; cooling during some breaks but did all my transfers standing! I used two cool drink cans. One to replace the other. I am not saying cool as brand cool.
I also thought of my lavender cool eye pad. The PA left me with eye pad on and the second coolest can held on my shoulder with my neck. I moved it around the pulses. The PA had applied a can straight from the fridge to the top of my back before she left!

John came back and got me a iced lemon barley drink. I had a good night. This morning I transfered again standing.

The PAs are competitive and want to reach 10mns of standing. I had to be firm and say that 3mns standing with good stretches is cool!
I think they are pleased to know that they assisted me to reach this stage so they feel I know well when to exercise or not!

The cool cans of drink are back in the fridge!

BTW, in 1992 John and I did a trip to Germany, including the Baltic Coast in East Germany: I was already using the cool can method as it was a very hot continental heatwave that year!

Keep c%l = less fatigue

Any one from the Bath branch that could help me?

2009-06-14T11:01:00.000+01:00

This is what I posted on Multiple Sclerosis Bath Branch-Rudge Fete Group on Facebook.

I wonder if any of you has the details of this year fete. I seem to have lost track of them in the in-tray. But I have been busy...

I am very interested in the Rudge fete as it raises funds for the Bath Branch MS Nurses appeal. I have campaigned to get the branch and society to say "MS Nurses and Therapists" this year as I got a bit annoyed when I got a questionnaire I had to write by hand, black ink and capitals...The branch has helped fund with central office the neuro rehab centre in St Martin's Hospital. I had been campaigning fo ages. So you will know why it so important when you read about me later...

The fete is later in the summer but it needs to be advertised asap. To raise the interest, I did this group to late 2 years ago. We need an event page linked to this group. We need to advertise the details. Basicaly, I need someone else to help.

I am a member of the Bath branch of the MS Society. I am also in regular contact with the MS Research and Resources unit in Bristol. It is the only hope I have to get any genuine help for progressive MS. So much so, I have helped them for 17 years. I have become a trustee of a charity called MS Research: http://www.ms-research.org.uk

I had a terrible time in hospital with so much wrong with me that I had to stay 15 weeks. I got to stand when they said I could not ever. I blogged about it: http://standup4ms.blogspot.com

I feel great this morning. My right foot reached the floor properly when getting out of bed. What did I do? Last night with my PA we stretched my hamstrings. My PA was doing a walk and I showed her what she could do to warm up. Now I have a big programme of exercise for the day. I need both legs to support me properly. Oh and I need some Fans for my charity page: MS Research

Oh and one of my friends Neel Shah has got off his bike ! His friend posted some photos tagging Neel during his ride to Paris for MS Research charity...show him that he truly is amazing:
http://www.justgiving.com/neelshah2

Cheerio, let me know if you can help asap !

How my life changed...

2009-06-01T19:22:00.000+01:00

I have Multiple Sclerosis (MS) (for 32 years and use a wheel chair) BUT I also had another problem...

In treating my other urgent and serious problem the professionals did not see what else I needed because of my MS.

This was compounded by hospital acquired infection meaning that I could not go to other departments in the hospital for the usual post operation rehabilitation courses. I had to be treated in my room which was not suitable for what I needed.

I lost ground because I could stand and transfer independently before my illness and now cannot do this – and this increased my dependency a lot.

The hospital professionals treating me did not realise that to tell somebody “you will never stand again” is emotionally devastating and how badly it would affect me.

I was determined to show that with hard work and professional help at home - and dogged determination - I WAS going to stand again –and I DID!

I could have had more help –everyone with MS needs this help –not just drugs that only work in the early stages of MS or sympathy but real goals for real life -to be able to stand in my kitchen and take a mug down from the cupboard to make coffee.

What can you do to help?

2009-05-30T11:25:00.000+01:00

I have no hesitation to ask you to help the charity MS Research.

I have helped the Multiple Sclerosis(MS) Research and Resources Unit in Bristol for 17 years. The Multiple Sclerosis International Federation(MSIF) used an extract from my Profile of the Month in December 2002 to illustrate what PwMS have to do to cope. I am amazed I thought that...

To keep positive I decided to help in MS research. In particular, in 1991, there was an opportunity to help with an experiment on muscle stimulation at the MS Research Unit in Bristol General Hospital (UK). However, in 1992, the unit was threatened with closure and I had to abandon some work that I was helping with. It was as if someone was ripping away a good book from my hands.

Now, the "good book" has been returned...

I think that it is wonderful that the MS Unit is moving to a one-stop centre to open a mobiltity clinic very soon and carry on with tremor and mobility rehabilitation research. that was worth fighting for. Now I want all PwMS that need it to benefit from this.

Please donate generously to MS Research, a charity that helps people like me:

MS Research undertakes to find practical solutions to everyday problems encountered by those with MS. Practical solutions for those where drug treatment is no longer effective.

There is a wish list on the website of MS Research charity, which gives an idea of how the funds are going to be used.

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Mobility rehabilitation for MS

2009-05-25T11:19:00.000+01:00

My name is Laurence Robb. I am 53 now. I found out I had Multiple Sclerosis (MS) in 1976 when I was working as a foreign language assistant in a secondary school in Chelmsford, Essex. I suddenly squinted when I was checking reading a number plate at a distance for my application for a driving licence. I am used to MS. It was diagnosed at the end of April 1983. It has been with me from Remitting-Relapsing MS (RRMS), until after arguing enough with my neurologist, we decided to call it Secondary Progressive MS (SPMS). I knew there was always something left behind after a relapse! I think it might have been in 1992. I do not need to see a neurologist. I have regular contact with physiotherapists specialized in neurology. When there are not enough of these specialist community neurology physiotherapists, I campaign to have some appointed. It is fun. My GP’s prescription is campaigning and physiotherapy. The neurologist I saw in 2003 approved. I have carried on with physiotherapy exercises from the time of my 1983 diagnosis. I became an outpatient of a local community physiotherapy service when I moved from London to the South-West. I progressed with SPMS from using one walking stick, two sticks and some crutches in 2000 to using the wheelchair most of the time since July 2007 after a nasty fall.

I am going to tell you what happened to me in February 2008. It was very traumatic and certainly not caused by MS. I am just nearly getting back to where I was, before it all started. This is going to show that at anytime, even with Multiple Sclerosis (MS) other parts of the body can go badly wrong. I would like to say that SPMS is not understood fully by the medical and clinical NHS staff. It leaves the persons with MS (PwMS) do their own battle, especially if they have a long experience of management of their MS with physiotherapy. In 2008, I had 32 years of MS. I was always active and I had received 25 years of physiotherapy treatment.

I feel that my problems need to be explained from the beginning. I was watching Arsenal getting beaten absolutely by Man United, in February 2008. I felt a bit shivering and cold. I had gone a bit numb and could not stand up from the settee to the wheelchair. I had a “normal” week after this incident. I saw my MS Nurse and mentioned what happened. She wondered if it could be a urinary tract infection (UTI). I said nothing seemed wrong and I did not have a bladder catheter.

The trouble started on Monday a week later when I had a sudden fever late morning I was shaking and rigoring, which needed a call to my GP. The fever went down with Paracetamol. It never left me really. It showed up each time the tablets were due; not with rigoring until late morning the following day. I never stood and tried walking using crutches, as I felt weak. I did no exercise standing in front of the kitchen worktop. It is good for the legs, hips and it makes me breathe deeply.

I was sent to Paulton Memorial Hospital (PMH) by ambulance as my temperature had shot up again. I was frightened! The suspected UTI, that had sent me there, was eventually ruled out. Just anaemia (fibroids) and the beginning of hyponatraemia (caused by two medications for continence and water retention) were diagnosed. Rigoring returned once during the little hours of one morning; a doctor had to drive urgently to my bedside from Bath Royal Infirmary (BRI). The fever calmed down like a ferocious animal receiving a dart.

The following day a geriatric specialist doing her round in PMH had a good look at me and found a painful spot on my lower right abdomen that needed scanning. It took so long to find a slot for this scan. PMH is a community hospital; local surgeries send a lot of work to be done there. I waited patiently. My fever was always returning in the afternoon. Unfortunately, I tried to stand and fell one of these afternoons when I had persuaded someone to help me. I would not stand again...

The long awaited scan time finally arrived. A consultant gynaecologist, who by luck was doing a clinic at PMH, had a look at the scan and said that my ovaries had to be removed urgently. They were swollen and one was inflamed. I felt worried about the operation but relieved that something was diagnosed properly at last.

Infections can be undiagnosed, as other symptoms, which are also urgent like a suspected cancerous tumour to an ovary revealed by the scan. The removal of my ovaries took precedence. After a second emergency intervention due to some internal abdominal bleeding, pneumonia was discovered with its pleurisy sidekick. In the middle of this, a tourniquet had been forgotten overnight by a busy doctor trying to place a canula, I have had a mark on my arm that will be there, as a tattoo, for a very long time. I had fallen asleep when the doctor was called away because I was pumping morphine. My arm was swollen but I remained calm and positive to help the healing process. I did not lose my arm; I felt I was lucky then!

My rehabilitation was concentrated only on my pulmonary condition. I also did not take well to one of the necessary blood transfusions, which even cross-matched, did not suit me at all: I fainted. It is not “Holby City” as I explained to the medical staff. It slowed down the rehabilitation. The ITU staff had to run to my bedside with special oxygen equipment. My room was full of interesting devices. My favourite was the one I called Fred, which was a programmable drip for the antibiotics to treat my pneumonia. It made things complicated when I had to go to have an x-ray. However, I was more horrified to see all these mirrors in the lifts. I needed to have my hair done!

My optimism was still strong. I started making plans to modify the house. I repeated often: “when I get out of here”; the list was getting very long. I was sad to miss the whole spring season. I had to stay a total of fifteen weeks in hospital.

In the middle of this, Methicillin resistant Staphylococcus aureus (MRSA) was diagnosed on my skin. Considering the long process of clearing this infection, which can only work when strict rules are adhered to; I still think that my rehabilitation has been delayed. I was feeling despondent. I had a young PwMS woman visiting me at the time, she said that I should consult my neurologist to see if there was a medication that would help me. I cried a bit for a while, as I knew that there was nothing of the sort. I have not taken any medication to help my MS since 1976.

The family meeting with the staff, just before my discharge from PMH, stated that the outcome of my being able to stand and walk would be unlikely. I was not taken seriously. Staff stood by their professional experience even if it was short. I thought that they did not know me! I had been very, VERY, ill and it is what the medical staff had said. They held on to SPMS at once as a reason for me not to be able to return to what I was able to do before my trauma. It made it easier for them...I was feeling brow beaten.

This might not be glossy but I hope it will enrich some experiences... In January this year, I was pleased with what I had achieved even if I had been told that I would have to use a wheelchair for the rest of my life and that nothing could be done. I was also repeatedly advised not to try standing on my own. I had to try this to see if I was getting any stronger. Standing helped keep my spirits up! I had been given a list of exercises, which I modified to fit with the care assistance I received.

I have had four daily visits from a service care agency since July 2008. In early March 2009, I found that one of the last muscles I had to get working again started holding me vertical (I was not upright in January!) I carried on with my exercises provided by a specialist community neurology physiotherapist. These have been updated to include standing in front of a worktop in the kitchen.

At the end of April 2009, I could stand up myself from a chair, shuffle and swivel into another chair! What will happen next? I feel vindicated! It is extremely therapeutic writing it down on the 1st of May, which was so sad for my family last year.
Laurence Robb

I wish this story benefited the charity that gave me the courage to do what I have done: MS Research
Reg.Office: 10 Oakwood Road, Henleaze, Bristol, BS9 4NR; Telephone: 0117 9286332.) Reg. Company No. 3005230 Reg. Charity No. 1043280 http://www.ms-research.org.uk/

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