A moment of joy in MS mobility rehab

This week there was no gym again as I was forever filling the gaps in the timetable for the week end and next week with my "Nice Care Package" for my Personal Budget care allocated by the Bath and North East Somerset  (BaNES) social services.

One of my own staff has been ill for a very long time and it has not helped me at all as the outings to the Bath University Gym had to be stopped. The progress of my standing with the Cricket Panache has also diminished as the assistance was not available. The painting sessions had to stop too just after restarting because I felt confident that anything started would not fester and nag unfinished in the corner of my eyes.

I recruited more people to fill some gap but it is mighty difficult as new people come and want loads of hours which are never going to be available. Some take what they can do as the afternoons are a rest and exercise session which I cannot afford missing with the Botulinum Toxin treatment which I receive against spasms.

So, I have someone for Saturdays and Sundays in the afternoon...any crisis or illness can be covered as there is a possible cover. Then I found two more people before Christmas: one of them has had a wrist operation and is still recovering and the other who was wanting more hours only works as cover from time to time.

This is routine for personal budget holders,  is it not? Is it what is needed for mobility rehabilitation of a person with Multiple Sclerosis (MS)?

I have found that Phoenix SW has put me in touch with a freelance carer from Bath and also OutandAboutandAway as helped me so much that I am painting more often, exercising better and John my husband is able to work full time!

This week after training on Tuesday and Wednesday I was able to do nearly a yoga posture: Half Shoulderstand -- Ardha Sarvangasana So of course I stood better the following morning with the Cricket Panache!

This was a moment of joy!

Who is really in control of a personal buget is still a mystery

I wrote this in December 2011, when I had seen a lot in the press about how social care was to be changed for the better...as I published about Making it Real.

 

Making it authentic... is the problem as the Finance department of the council is the main controller. Last year I was reassessed by what the council called their Vanguard team, I was told that I could give a Xmas bonus to my team if I wished, so I did. This is what had happened to me previously which considering that I felt much better made me taking the managerial decision of allocating a Xmas bonus to my deserving overstretched staff.

My start with the Personal Budget had been very poorly and very unfairly managed by the Bath and North East Somerset council (BaNES). The care was cut suddenly with nobody able to speak to me left in the lurch and my husband head of department in an academic establishment. There was no money paid into the account but my own contribution for the week it was starting. The Shaw Trust that was supposed to help me recruit had found nobody before mid May 2010. I had paid my fee for support and paid repeatedly for press advert once to many. My Personal Budget was momentarily overdrawn. As the account has got my name on it I paid the overdraft and started arguing with social services.

My social worker had been allocated to another area of the council. I had been assured by letter that my case would remain hers until Personal Budget was ready to start.

I wanted out of the care received by a care company and I was not happy with the care they could only provide. They would change their calling time with no notice. The good carers were not respected by the management, some were expected to drive fast in order to be able to provide the care. The good members of staff were leaving one after the other. I applied for the Personal Budget in August 2009 when my husband had a successful kidney transplant. He felt that he could help better with managing my care. In December 2009, I got what was called “a good little package”. I should have heard the alarm bells!

I was particularly upset by the care I received as the “elf n safety” regularly mentioned was not very good. Let’s start: using the same pair of rubber cloves throughout one call; emptying waste paper baskets by same gloved hand; rinsing and emptying catheter bag in wash basin…Then being told “I don’t care if your foot drops off” when I was suffering my 5^th toe nail infection…Then being confronted whilst in the buff on my own commode with the door shut by “how dare you?”. This whole period was not assessed as abuse but as “lack of respect”.

At the same time I was waiting for an appointment with a neurologist, I had a lot of pain. I was in a daze of Ibuprofen and Paracetamol. I did have basic self wheeling wheelchair issued by the South West Wheelchair Centre. I could not go there for any assessments and was relying on their visits for any improvements. Transport would not have included care. My husband was not fit before the transplant to help me go there as a session can take a few hours; he had many responsibilities at work and dialysis three times a week. The wheelchair was issued and “they” became deaf.  It did not give me a good posture. Its front wheel were catching my right foot which had most spasms because of the toe nail infections and the contrariety caused by the poor care I had received. 

I could not find care starting at 7 am which was necessary to permit bathroom use and reassure my husband who started work at 9 am. The care company was the only one able to do that time. I am a retired professional who used to get up at 5:30am when working. It is very hard to maintain a good schedule of calls that fit with one’s life when you are a wheelchair user in need of assistance for transfer. A sliding board is your best friend! That’s how you go to the loo…There are no paper pant involved. Nice regular healthy food that I believe kept me out of hospital...and a good eye for knowing when the next care worker will appear...

Found some old news

This is what I wrote on 30th December 2010 after a very bad year when social services of Bath and North East Somerset (BaNES) had mismanaged my transfer to leaving me in charge of my care with a personal budget (PB).
The budget had been rectified by the Vanguard Team but the sincere apology took ages to be sent to me...
I apologize for not writing more about  2011 which has had even more good things like a holiday but some tears due to a very erratic PA with huge sudden health and family issues yet unresolved.

Looking back at the following article, it seems that I could find the fun in Clun and rebound. I wish that things will always get better. Sometimes, I feel like Candide of Voltaire. I am sure that the story will end well.

It is time to look for the best moments of 2010, at the same time last year I was in pain and in tears… What made such a difference? I still have Secondary Progressive Multiple Sclerosis (SPMS). It is still here like a selfish bedfellow! It keeps me awake with worry and pain. I managed some overbearing medication particularly at a time when I had to be in control of how my personal care was delivered. The best was to start with direct payments.

• Finding PAs 
• Booking a short stay break 
• Getting my own support equipment to make it happen 
• Getting a very short operation on my foot 
• Getting botox treatment to diminish spasms 
• Recover some strength 
• Recover from the negative effects of some care 
• Working out how to make do with faulty Direct Payment 
• Going to Shropshire with a PA 

Clunton and Clunbury,
Clungunford and Clun,
Are the quietest places
Under the sun.

easyfundraising and MS charity

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/ Thanks Laurence Trustee and Webmaster MS Research.

Response to an invitation

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) another sick and having a minor operation that will keep her inactive for 2 weeks, and the others set in their other jobs with family commitments...and I nearly forgot one new one with itchy feet as there are not enough hours...That means it 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  early because it was convenient to some head of department to have less cases opened that appeared to be stagnant with the Shaw Trust that did not do as much as what it said on the box. My staff was amassed in a hurry and composed of people working somewhere else. I was not given enough money to do anything and having recruited someone that I could not pay.

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

I just got better and established a very good routine that means the care when it is regular has the result of making me progress and be mobile. When I am mobile I become healthier and more active and cheerful...I need regular exercise for the physiotherapy following botulinum toxin injections to help control spasms in my legs (bad wheelchair, poor foot care and bad posture). I re advertised from19th January and got Phoenix SW to come tomorrow. My husband is in full time employment and we find that having me out of bed at 7am is good for him to go to work. The body is regular and does not stop during the weekend.

Care agencies are far too limiting and expensive...that is nothing...they are also very poorly trained with constant staffing problems. Social services close cases and there is no way to advertise centrally and organise local pool of carers. It is down to the individual to manage on their own. I do not want to lose my mobility and independence. I need regular assisted exercises only available on personal budget.

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

Happy New Year

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?

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)