The end is in sight...!

Today I met with the Medical Director of Cardiff LHB who has assured me that they will take over the whole of Pete's care package as it stands at the moment.

It looks as if we have the result we have been fighting for over the last 18 months ie to keep the carers who have looked after Pete over the last 7 years.

The details have to be finalised so we're not celebrating yet but I'm cautiously optimistic!

None of this would have happened without all your support, hard work and persistent letter-writing/e-mailing/petitioning etc

THANK YOU ALL SO MUCH!!

Life Post-Assessment

The dreaded assessment is done but Cardiff Social Services wouldn't budge on the issue of a mediator so I took my own!
Dr Dave Bailey attended along with Pete and myself and the assessors from Cardiff LHB and Cardiff Social Services.
It was pretty straightforward as Pete's needs are obviously immense and so he is almost certain to qualify for Continuing Health Care - but that isn't the issue!
The issue is that what "normally" happens is that the District Nursing service take over once someone like Pete is deemed to have primarily Health needs. This means losing all the carers who have looked after Pete for the last 6 years and the independence that we currently have to organize that care.
Thankfully Dr Bailey was there to point out that what Pete needs is carers who know him well enough to instinctively know what he wants despite his almost total inability to communicate and that changing his carers would be a deterioration in his care package.
We will wait and see if the message gets through and if Edwina Hart and Graham Williams from the Welsh Assembly Government continue to monitor the situation as closely as they have been.

As far as the Rees family are concerned, life goes on - Catrin is enjoying school holidays and Pete has another chest infection but we're hoping he will perk up now he's on antibiotics.

Date for Assessment - July 14th 2008

Cardiff Local Health Board contacted me today to tell me that Pete's assessment will take place at 1pm on Monday 14th July.
There will be a representative from both Social Services and Health and they will be undertaking a joint assessment of Pete's needs.
We have not resolved the issue of a mediator but I have had a personal letter from Edwina Hart which has meant that I am willing to go ahead despite this.
The Director of Social Services in the Welsh Assembly Government, Graham Williams, has met with both Health and Social Services and they have written their first joint letter to us regarding the assessment.
Edwina Hart has expressed her dissatisfaction with the way our situation has developed and has assured us that her "officials will remain in close contact with the local authority and the LHB to establish that progress is being made by them".
As his condition continues to deteriorate I hope that the intervention of the Minister for Health and Social Services will produce the result that Pete deserves - to die at home with dignity.

Sunday Express

The Sunday Express are covering our story this weekend - don't forget to buy a copy!

You can have my money if Daddy can die at home

South Wales Echo article

Final Demand

I received the attached letter at 4.20pm today....the day before the elections....too late to get any publicity going....too late to contact my solicitor.....HELP!!!!

Click on the letter to read

Election Day May 1st

Local elections for those of you who live in Cardiff are held this Thursday.

I wouldn't dream of trying to influence anyone but you might want to think about the following when you're making that decision as to whether to bother voting and for whom....

Cardiff Council has a small Lib Dem majority and therefore control the Executive.
Cardiff Council has not been behaved in a professional, ethical or humane way in their dealings with this vulnerable family.
Julie Morgan LABOUR MP and Robert Jones from her office have been a tremendous support to us and have worked incredibly hard to try and negotiate an agreement between ourselves and Cardiff Council regarding Pete's care.

Please use your vote to make a difference to us and other families in a similar situation.

Dr Bailey, Chairman GPC Wales intervenes

Dear Ms Schelewa

I am writing on behalf of Dr West who has requested help and advice in the matter of the continuing dispute regarding assessment for ongoing healthcare needed for her husband Mr Peter Rees. I have to say that the attitude of Cardiff social services to a hard working practising GP has the potential to do immense damage to future working relationships between the profession and Cardiff Social Services particularly threats to use the POVA legislation a flagrantly bullying tactic that I understand has been used by other social services against Welsh GPs and one which the BMA will not tolerate.

In respect of this specific issue I understand that Cardiff Social Services has refused to respect the decision of independent complaints panel that

“We are of the opinion that an external mediator, experienced in work with social services should be considered to help move from the impasse.

We feel that it should be considered that an assessment of need should be carried out by qualified professional(s) independent of the authority.

Decisions, discussion and outcomes should at all stages be explicit, transparent and recorded, so that the complainant and the authority are clear about actions taken and decisions reached, and their compliance with law and statutory guidance.”


and has instead merely appointed someone unfamiliar with the case to take notes and write a report. I have to say as a practising doctor I am unfamiliar with the concept that a complaints procedure can just be cavalierly ignored if one doesn’t like its conclusions.

I understand that the authority at the very last minute is trying to force through this assessment on Monday 21st against the reasonable concerns of Dr West. Following the bullying and harassment that has left her unable to provide medical services to her patients for the last three months, I find this attitude frankly astonishing.

You selectively quote from the minister’s letter to Dr West so I would remind you that she also said

“They would appoint an independent person to the multi-disciplinary team to ensure an impartial and fair evaluation of your husband’s needs and his eligibility for this type of care. This is, I understand, in line with the stage 3 recommendation in response to the complaint you had made to the authority via its complaints procedure over the way it had handled your husband’s care.” (My italics)

As previously stated I feel your response to the finding of your own complaints procedure does you no credit and I shall certainly reiterate this view to the minister when I meet her later this month.

Clearly both sides are not in agreement with the process. When a satisfactorily constituted assessment is convened I shall be accompanying Dr West for support and look forward to seeing you then.

Dr. David Bailey, Chairman General Practitioners Committee Wales

You'd think I'd have learned by now not to trust them!

Oh what a naive little soul I am!
When Cardiff Council said they had chosen someone to act as mediator for Pete's assessment I foolishly assumed that they had chosen someone suitably experienced and qualified as recommended by the Independent Complaints Panel and endorsed by Edwina Hart.
Silly me.
They have chosen an assistant Team Manager from a neighboring council who will "observe the assessment process" and write a report at the end of the assessment. Not quite what was promised.
So that assessment that I had set up for the 21st April probably won't go ahead after all.

I'm going to attach my response to social services with quotes from the Independent Complaints Panel and Edwina Hart so feel free to put pressure on Edwina Hart and the Local Authority to make sure this assessment happens properly!

Letter to the Local Authority

Susan Schelewa
Operational Manager
Room 236
Adult Services
County Hall
Cardiff
CF1 4UW

8th April 2008
Dear Sue,

Thank you for your letter dated the 19th January 2008 but which was received on the 22nd March 2008 where you named Jane Williams as the person who has been identified to undertake the role of “independent oversight of the assessment process”.

Jane contacted me last week whilst I was away and I returned her call today.
I explained that I had understood her role to be that which was implied by our telephone conversations of the 29th February & 7th March.

She informed me that she had no prior knowledge of our case and that the remit she had been given by her Operational Manager Ann Linton was simply to observe the process and to write a report at the end of the assessment.

I fear that I may have misunderstood her role as being that recommended by the Independent Complaints Panel in their Stage 3 Report:

“Because of the breakdown of trust is apparent between the complainant and team manager, we think it is unlikely that this impasse can be resolved without mediation by someone appropriately qualified and trusted by the complainant and the authority.

We are of the opinion that an external mediator, experienced in work with social services should be considered to help move from the impasse.

We feel that it should be considered that an assessment of need should be carried out by qualified professional(s) independent of the authority.

Decisions, discussion and outcomes should at all stages be explicit, transparent and recorded, so that the complainant and the authority are clear about actions taken and decisions reached, and their compliance with law and statutory guidance.”




During my conversation with Jane Williams today she explained that she had not been advised that her role was that of mediator and that she was not qualified to act in this way and agreed that what was needed was an experienced and appropriately qualified mediator with the ability to facilitate discussions between the LA and the LHB.

This doesn’t seem to be in line with the communication I have had from Edwina Hart which I have quoted below for your perusal.

“I am advised that your MP, Julie Morgan, has now met with elected members and the Council’s Director of Social Services. In that meeting the authority agreed that, if your husband and you were to agree to a continuing healthcare assessment, they would appoint an independent person to the multi-disciplinary team to ensure an impartial and fair evaluation of your husband’s needs and his eligibility for this type of care. This is, I understand, in line with the Stage 3 recommendation in response to the complaint you had made to the authority via its complaints procedure over the way it had handled your husband’s care.

Resolving the issues over your husband’s care will require trust between all parties and this has clearly been tested and damaged over recent months. I have therefore asked to be kept informed of the progress regarding the provision of your husband’s care.”

The assessment date had been set for the 21st April 2008 but it seems unlikely that this will be able to go ahead unless you are able to clarify this misunderstanding to our mutual satisfaction and that of all parties involved.

I look forward to a speedy written response to these concerns.

Yours sincerely,

Siaron West

cc Public Services Ombudsman for Wales
Cllr John Dixon, Cardiff County Council
Byron Davies, Chief Executive, Cardiff County Council
Cllr Rodney Berman, Cardiff County Council
Julie Morgan MP, Cardiff North
Edwina Hart AM, Minister for Health & Social Services
Mr John Goodwin, Panel Chair, Independent Complaints Secretariat
Christine Morgan, Cardiff & Vale Coalition of Disabled People
Rosa Curling, Leigh Day & Co Solicitors
Jean Hazelwood, Senior Nurse Assessor Cardiff LHB
Brendon Lloyd, Medical Director Cardiff LHB
Dr David Bailey, Chairman GPC Wales
Ms Neelam Bhardwaja, Corporate Director (Social)

The Ups and Downs of life with Pete

Pete's not been very well the last few weeks and is going to need further investigations.
Thankfully we have some great friends and thank you to Tim for agreeing to see Pete in the lovely Royal Glamorgan Hospital - the friendliest hospital ever!

Thank you to all 1,037 of you who signed the petition to the Prime Minister. It has now been passed down to the Welsh Assembly which will hopefully make a difference to us and lots of other families suffering as a result of the inability of Health and Social Services to work together to provide the best care for the chronically sick and disabled people of Wales.

On a personal note it looks like Pete's Unified Assessment will be held on either the 21st or 22nd of April.
We are hoping that since Edwina Hart's intervention there will be some sensible joint working between the Local Authority and the Local Health Board.

Still waiting for that apology from the Director of Social Services....!!!

PROGRESS!

John Dixon (Cardiff Council - Lib Dem) has agreed to meet with Julie Morgan (Labour MP).
As a result we have been unofficially offered an Independent Manager from a neighboring council to monitor the Unified Assessment which will be done by a social worker from Cardiff.

This is good news (I think) as it goes one step towards fulfilling the recommendations made by the Independent Complaints Panel back in December.

We're still waiting for our full and unreserved apology from the Director of Social Services and for the formal removal of the threat of a POVA Case Conference from the Stage 2 Report from October.

We have also had our first direct communication from Byron Davies, Chief Executive of Cardiff Council and a personal e-mail from Edwina Hart.

It's a move in the right direction but it's not over yet.

This progress is as a result of your support, prayers, constant e-mails, petition-signing and letter writing.

A VERY BIG THANK YOU TO YOU ALL!!

D-Day

Tuesday 4th March is fast approaching.
This is the date when the Director of Social Services will withdraw all of Pete's care leaving Catrin (aged 7) and myself to look after Pete 24 hours a day, 7 days a week.
Obviously I can't let this happen so with a week to go they've twisted my arm into agreeing to an assessment.
I'm not optimistic that they will use a mediator to carry out the assessment as has been recommended by an Independent Panel.
I don't believe that the outcome can be anything other than a foregone conclusion.
As soon as Pete meets the Continuing Health Care Criteria he becomes the responsibility of the NHS and Social Services' budget will look better at the end of the financial year 2008.
And that's what it's all about, isn't it?

THANK-YOU!!!

A big thank-you to everyone who has signed the petition to the Prime Minister - it's now over 700 names which makes Pete feel very popular.
Catrin updates the number and sticks it on the TV every day to cheer him up!
Thanks to all who have taken the time and effort to write, e-mail and contact the powers that be who have made our lives so difficult over the last few months.
Particular thanks to those who have sent letters that have made me laugh - you know who you are!!!!!
Pete's in respite this week as we all need a break but he will be back next Monday in the bosom of his loving family.......yep I can hear him laughing at that concept!

One Wales - Welsh Assembly agenda

I have just been told about the One Wales document - Labour and Plaid's vision for the future of the government of Wales over the next 4 years.
It was published on 27th June 2007 and contains the following statements...

A Healthy Future
"We recognise the need to work harder to improve the well-being of all vulnerable and disadvantaged in Wales who rely heavily on our health service"

Supporting Social Care
"We are firmly committed to improving the care provided to vulnerable people by public, private and voluntary bodies. We will help people to be independent and achieve their full potential, whilst also protecting people when they are most vulnerable. We will drive forward improvements in the quality of care, creating seamless care pathways at a fair cost."

If you don't agree that the phrases in italics have been applied to Pete's case then please write to the Welsh Assembly - Edwina Hart in particular.