Lundi 25 février 2008
Today I read about the plight of Siaron West and Peter Rees and my heart went out to them, Siaron wrote :
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.
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.
I have proceeded in the proper way through Cardiff Council’s Complaints Procedure with the following outcome
STAGE 1 No response within the required 10 working days. When prompted a response arrived but Pete’s surname was incorrect and did not address any of the issues raised.
STAGE 2 Report by Investigating Officer from the council took 6 months rather than the required 5 weeks. Upheld 3 out of my 5 complaints. One 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.
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)
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 SITUATION NOW:
* The director of Social Services, Neelam Bhardwaja has chosen not to follow any of the recommendations made by the Independent Complaints Secretariat which is the final stage in Cardiff Council’s own complaints procedure.
* She has given me 2 weeks to agree to an assessment otherwise Pete’s care will all be withdrawn on the 4th March 2008.
* I have asked for more time but this request has been refused.
* In my communications with the Local Authority and the Local Health Board they have made it clear that the outcome of the assessment will almost certainly be that Pete will meet the Continuing Health Care Criteria and that responsibility for his care will pass to the NHS.
* We will then lose all of Pete’s carers who have looked after him for the last 6 years.
* Cllr John Dixon has so far refused to meet with Julie Morgan and her constituents (of whom I am one) to discuss these issues.
I have tried to utilise the media to bring this case to wider public attention so please use the following links for more information:
Radio Wales 21st Jan 2008
Link to summary of broadcast: http://www.bbc.co.uk/wales/radiowales/sites/eyeonwales/updates/20080121.shtml
South Wales Echo 2nd Feb 2008
Link: http://icwales.icnetwork.co.uk/news/cardiff-news/2008/02/02/bid-to-end-dying-man-s-misery-91466-20427718/
Wales Today 28th Jan 2008
Jeremy Vine show Radio 2 1230pm 29th Jan 2008
BBC News article
Link: http://news.bbc.co.uk/1/hi/wales/7199745.stm
Article related to Welsh language documentary shown on S4C, 14th Feb 2006
Link: http://news.bbc.co.uk/welsh/hi/newsid_4710000/newsid_4713200/4713288.stm
We also have the full support of Julie Morgan MP who is trying to arrange a meeting with John Dixon (Executive Member Cardiff County Council responsible for Health, Social Care & Wellbeing) and has issued a press release highlighting the problems that we and a number of her constituents are facing.
Now I need your help!
Here are some suggestions…
For elected officials ask the following questions
1. Their party’s official position (if there is one)
2. As an individual if they would vote for this situation to continue ie Pete’s care being withdrawn, which could result in him being placed in a Nursing Home, potentially involving more cost to the tax payer and/or Siaron giving up her work in the NHS
http://www.writetothem.com/
Contact
Your own MP or Assembly Members (both directly elected and those elected through proportional representation)
Contact
Edwina Hart AM Minister for Health and Social Services
9 Pontardulais Road National Assembly for Wales
Gorseinon Cardiff Bay
SA4 4FE Cardiff CF99 1NA
Tel 01792 895481 02920 898400
Fax 01792 895646
edwina.hart@wales.gov.uk
There are guidelines due out from the Welsh Assembly to clarify the situation and give Local Authorities and Local Health Boards clear guidance.
Please encourage her to get these out as soon as possible and emphasise that England already have guidelines that allow cases to be assessed on an individual basis and allow for shared care within the legal framework.
The Director of Social Services is ultimately accountable to Edwina Hart so please ask her to investigate the way in which Cardiff Social services have acted as they have disregarded their own complaints procedure and the letters and reports from them have caused us great distress because of their overbearing and sometimes threatening approach.
Contact
Cllr John Dixon (Lib Dem) 29 Galston Street
Executive Member Health, Social Care & Wellbeing Adamsdown
Cardiff County Council Cardiff
County Hall CF24 0HR
Cardiff Bay 02920 255667
Cardiff 02920 465351
CF10 4UW 07974 021172
He is the Executive Member of the Council responsible for Health and Social Services and at present the Director of Social Services appears to have his full backing.
The Liberal Democrats are now the largest party on Cardiff County Council and control the Executive Committee but they do not have an overall majority.
How you vote as a Cardiff resident will be crucial in the forthcoming elections and I would be grateful if you could emphasise this when communicating with any of the councillors.
Contact
Neelam Bhardwaja
Corporate Director (Social),
Room 515, County Hall, Atlantic Wharf, Cardiff , CF10 4UW
nbhardwaja@cardiff.gov.uk
If you live in Cardiff there are local elections in May
Contact your councillor
They will say they can’t comment because Pete and I are not in their ward but you can let them know how you will be voting in the next election.
http://www.writetothem.com/
Contact our councillors (Heath – all Liberal Democrat)
Cllr Michelle Michaelis Cllr Gerald Harris Cllr Jim James
Treetops 40 St Malo Road 93 Maes-y-Coed Road
Bridge Road Heath Heath
Old St Mellons Cardiff Cardiff
Cardiff CF14 4HN CF14 4HE
CF3 6UY
Tel 02920 793380 02920 217986 02920 611322
Fax 02920 779745 02920 628308 02920 623901
Mob 07974 413554 07980 922546
m.michaelis@cardiff.gov.uk g.harris@cardiff.gov.uk j.james97@ntlworld.com
Surgeries held 1st Sat each month (term-time) at Birchgrove Primary School 10am-11am and at Maes-y-Coed Community Centre every 3rd Weds evening 630-730pm.
Finally….
Please sign the petition to the Prime Minister.
Link: http://petitions.pm.gov.uk/PeteRees/
Generate any media interest you can – try letters to both local and national newspapers.
Send this information to everyone you know and encourage them to do the same!
Look at my blog : http://www.siaronwest.blogspot.com
This reminds me of ADAPT protests and campaignig when I was in the US -
People in the UK have achieved direct payments but it looks like disabled people like Peter still can have their choices taken away from them.
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.
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.
I have proceeded in the proper way through Cardiff Council’s Complaints Procedure with the following outcome
STAGE 1 No response within the required 10 working days. When prompted a response arrived but Pete’s surname was incorrect and did not address any of the issues raised.
STAGE 2 Report by Investigating Officer from the council took 6 months rather than the required 5 weeks. Upheld 3 out of my 5 complaints. One 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.
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)
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 SITUATION NOW:
* The director of Social Services, Neelam Bhardwaja has chosen not to follow any of the recommendations made by the Independent Complaints Secretariat which is the final stage in Cardiff Council’s own complaints procedure.
* She has given me 2 weeks to agree to an assessment otherwise Pete’s care will all be withdrawn on the 4th March 2008.
* I have asked for more time but this request has been refused.
* In my communications with the Local Authority and the Local Health Board they have made it clear that the outcome of the assessment will almost certainly be that Pete will meet the Continuing Health Care Criteria and that responsibility for his care will pass to the NHS.
* We will then lose all of Pete’s carers who have looked after him for the last 6 years.
* Cllr John Dixon has so far refused to meet with Julie Morgan and her constituents (of whom I am one) to discuss these issues.
I have tried to utilise the media to bring this case to wider public attention so please use the following links for more information:
Radio Wales 21st Jan 2008
Link to summary of broadcast: http://www.bbc.co.uk/wales/radiowales/sites/eyeonwales/updates/20080121.shtml
South Wales Echo 2nd Feb 2008
Link: http://icwales.icnetwork.co.uk/news/cardiff-news/2008/02/02/bid-to-end-dying-man-s-misery-91466-20427718/
Wales Today 28th Jan 2008
Jeremy Vine show Radio 2 1230pm 29th Jan 2008
BBC News article
Link: http://news.bbc.co.uk/1/hi/wales/7199745.stm
Article related to Welsh language documentary shown on S4C, 14th Feb 2006
Link: http://news.bbc.co.uk/welsh/hi/newsid_4710000/newsid_4713200/4713288.stm
We also have the full support of Julie Morgan MP who is trying to arrange a meeting with John Dixon (Executive Member Cardiff County Council responsible for Health, Social Care & Wellbeing) and has issued a press release highlighting the problems that we and a number of her constituents are facing.
Now I need your help!
Here are some suggestions…
For elected officials ask the following questions
1. Their party’s official position (if there is one)
2. As an individual if they would vote for this situation to continue ie Pete’s care being withdrawn, which could result in him being placed in a Nursing Home, potentially involving more cost to the tax payer and/or Siaron giving up her work in the NHS
http://www.writetothem.com/
Contact
Your own MP or Assembly Members (both directly elected and those elected through proportional representation)
Contact
Edwina Hart AM Minister for Health and Social Services
9 Pontardulais Road National Assembly for Wales
Gorseinon Cardiff Bay
SA4 4FE Cardiff CF99 1NA
Tel 01792 895481 02920 898400
Fax 01792 895646
edwina.hart@wales.gov.uk
There are guidelines due out from the Welsh Assembly to clarify the situation and give Local Authorities and Local Health Boards clear guidance.
Please encourage her to get these out as soon as possible and emphasise that England already have guidelines that allow cases to be assessed on an individual basis and allow for shared care within the legal framework.
The Director of Social Services is ultimately accountable to Edwina Hart so please ask her to investigate the way in which Cardiff Social services have acted as they have disregarded their own complaints procedure and the letters and reports from them have caused us great distress because of their overbearing and sometimes threatening approach.
Contact
Cllr John Dixon (Lib Dem) 29 Galston Street
Executive Member Health, Social Care & Wellbeing Adamsdown
Cardiff County Council Cardiff
County Hall CF24 0HR
Cardiff Bay 02920 255667
Cardiff 02920 465351
CF10 4UW 07974 021172
He is the Executive Member of the Council responsible for Health and Social Services and at present the Director of Social Services appears to have his full backing.
The Liberal Democrats are now the largest party on Cardiff County Council and control the Executive Committee but they do not have an overall majority.
How you vote as a Cardiff resident will be crucial in the forthcoming elections and I would be grateful if you could emphasise this when communicating with any of the councillors.
Contact
Neelam Bhardwaja
Corporate Director (Social),
Room 515, County Hall, Atlantic Wharf, Cardiff , CF10 4UW
nbhardwaja@cardiff.gov.uk
If you live in Cardiff there are local elections in May
Contact your councillor
They will say they can’t comment because Pete and I are not in their ward but you can let them know how you will be voting in the next election.
http://www.writetothem.com/
Contact our councillors (Heath – all Liberal Democrat)
Cllr Michelle Michaelis Cllr Gerald Harris Cllr Jim James
Treetops 40 St Malo Road 93 Maes-y-Coed Road
Bridge Road Heath Heath
Old St Mellons Cardiff Cardiff
Cardiff CF14 4HN CF14 4HE
CF3 6UY
Tel 02920 793380 02920 217986 02920 611322
Fax 02920 779745 02920 628308 02920 623901
Mob 07974 413554 07980 922546
m.michaelis@cardiff.gov.uk g.harris@cardiff.gov.uk j.james97@ntlworld.com
Surgeries held 1st Sat each month (term-time) at Birchgrove Primary School 10am-11am and at Maes-y-Coed Community Centre every 3rd Weds evening 630-730pm.
Finally….
Please sign the petition to the Prime Minister.
Link: http://petitions.pm.gov.uk/PeteRees/
Generate any media interest you can – try letters to both local and national newspapers.
Send this information to everyone you know and encourage them to do the same!
Look at my blog : http://www.siaronwest.blogspot.com
This reminds me of ADAPT protests and campaignig when I was in the US -
People in the UK have achieved direct payments but it looks like disabled people like Peter still can have their choices taken away from them.
par eleanor
publié dans :
independent living
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