How it started

My name is Siaron West, I have been married to Peter Rees for 12 years and we have a 7 year old daughter Catrin.

Pete was diagnosed with Primary Progressive Multiple Sclerosis in 1995 and for the last 6 years has been severely disabled whereby he is confined to a wheelchair with a catheter and a feeding tube into his stomach.
He currently has a small amount of movement in his left hand only and communicates by shaking or nodding his head.
When he is unwell or tired he cannot operate a remote control for the bed, chair or television and is totally unable to communicate.
His condition is terminal, he continues to deteriorate and it is uncertain how much longer he will live.

I provide the majority of his care (medical, nursing and social) but we have some assistance from Home-care (Social Services) and the Independent Living Fund (ILF).
Home-care can provide personal care in the form of 2 carers to wash and dress Pete in the mornings and to put him to bed at night along with two 15 minute check calls during the day.

The Independent Living Fund is funded centrally by the government and its aim is to keep disabled people in their own homes by providing the means for them to employ their own carers and live as independent a life as possible.

The ILF money enables us as a family to live as normal a life as is possible under the circumstances. We use the ILF money to pay for sitters so that I can work, socialise and take Catrin to and from school and do other activities with my daughter.
I also run two children’s and youth clubs on a local estate.
Both Home-care and the ILF are means tested and we pay a certain amount towards Pete’s care.
This care package has been in place for the last 6 years, it works very well and all we want is for this to continue.

Social Services are keen to reassess Pete as they feel that his care should be funded by the NHS.
This would be free to us and not means tested but would mean that the total cost for his social care would have to be met by the NHS and not the Local Authority.

This means that we would lose both Home-care and the Independent Living Fund and may result in Pete having to be placed in a Nursing Home which is likely to be more expensive for the tax-payer.

Why we are fighting to keep things the same

I and Andrew Rees (a friend of my husband) have Enduring Power of Attorney for Pete which means that we make decisions for Pete based on what is in his best interests.
We feel that removing Pete’s current care package would be detrimental to us as a family for the following reasons

• Pete is terminally ill and any change will cause him great distress which may cause him to deteriorate further
  
  
• Pete’s carers have all looked after him for at least 6 years and have an amazing ability to understand his needs despite his extremely limited communications skills
  
  
• The NHS has a limited ability to fund a social care package and so the best they could offer would be equivalent to what Home-care currently do ie personal care with up to 5 visits a day and would not be able to fund sitters.

This means that I would be unable to work or socialise, take my daughter to and from school, spend time with her outside our home or run children’s and youth clubs. I would have to ask friends to help out whenever I left the house for any reason, even to buy groceries.

The complaints procedure - Ombudsman

I have requested from the beginning and at every stage that they investigate but the Ombudsman claims that they are not allowed to intervene until the complaints procedure has been completed.

When I had not received the recommended response from the Director of Social Services within 10 working days I referred this case to the Ombudsman and their investigation is ongoing.

The Ombudsman, however has no legal power to challenge or change Cardiff Council’s decisions.

The complaints procedure - Stage 3

An Independent Complaints Panel made the following recommendations

• That the paragraph containing the threat of a POVA be retracted from the report
  
  
• That a letter be sent to me within 10 working days of receipt of the report by the Director of Social Services
  
  
• That this letter should confirm that there have, at no point been any adult protection concerns and that the Authority apologise fully and without reservation for the distress, alarm and threat caused by this statement (ie the mention of a POVA)

The complaints procedure - Stage 2

The Report by an Investigating Officer from the council took 6 months rather than the required 5 weeks. In it 3 out of my 5 complaints were upheld. One complaint couldn’t be addressed as the social worker involved had left the authority and was subsequently investigated by the Care Standards In Wales Agency.

The final complaint ie that the assessment was not in Pete’s best interests was responded to with a threat to call a Protection Of Vulnerable Adults Case Conference with the recommendation that Pete be made a Ward of Court if I didn’t agree to an assessment.

This basically means that Social Services would make an allegation that I was abusing Pete by not acting in his best interests and therefore shouldn’t be allowed to make decisions for him.

As a GP it would automatically trigger a POVA Case Conference to investigate me professionally and a Child Protection Case Conference would be called for Catrin.

As well as affecting my work and family life a POVA would also mean I would be unable to continue my work with children and young people.

The complaints procedure - Stage 1

I initially made a formal complaint to Cardiff County Council.
According to their own protocol a response is required from the Council within 10 working days.
No response was received.
When prompted with a further letter a response arrived but Pete’s surname was incorrect and the Team Manager did not address any of the issues raised.