Last week I went to Westminster with other families whose loved ones with learning disabilities & challenging behaviour have been supported by Mencap and the Challenging Behaviour Foundation. We told our stories to Norman Lamb MP, Minister for Care.
Another parent has kindly agreed for me to share her blog about the meeting. Please read & support us.
http://www.mencap.org.uk/blogs/my-daughter-s-out-fight-continues
Showing posts with label assessment and treatment units. Show all posts
Showing posts with label assessment and treatment units. Show all posts
Tuesday, 25 March 2014
Monday, 3 March 2014
Chrissy's New Home
We've been very busy getting Chrissy's new bungalow ready for her.
She is on her way there now. Very excited!
Long-time readers of this blog will know what a fight we've had to get to this stage in her life. She spent over four years in an assessment & treatment unit, & now she's ready to face the world again.
Let's hope the world is ready for Chrissy!
Fingers crossed that she will fall in love with her lovely new bungalow on the outskirts of Winchester city centre. It's going to be a huge change from living on a locked ward. She will have two carers with her at all times, which will enable her to live as independently as she can.
Watch this space....
She is on her way there now. Very excited!
Long-time readers of this blog will know what a fight we've had to get to this stage in her life. She spent over four years in an assessment & treatment unit, & now she's ready to face the world again.
Let's hope the world is ready for Chrissy!
Fingers crossed that she will fall in love with her lovely new bungalow on the outskirts of Winchester city centre. It's going to be a huge change from living on a locked ward. She will have two carers with her at all times, which will enable her to live as independently as she can.
Watch this space....
Thursday, 4 July 2013
Continuing Healthcare Disputes
Despite the parties involved in this messy CHC dispute engaging lawyers, & us letting Norman Lamb MP & MENCAP know about it, there's been no end in sight. Now we're seeing some movement but we're not holding our breaths....
On the NHS website it suggests that disputes are escalated to PALS or an independent advocacy service. We tried those routes but it kept bouncing back to local resolution. In our experience 'local resolution' is a place where promises are made to get the strategic health authority, who, until recent NHS reorganisations, were responsible for local NHS trusts at regional level, to call off their dogs. Promises made at our local resolution meeting in 2011 got broken then we were simply stonewalled.
No doubt many people fighting for CHC funding, or their relatives, give up because they lose the will to live but the red tape & barriers we've come up against make us even more determined to press on. It's hard to understand why there isn't a better escalation route, say someone working at local level with the local authority & NHS to resolve time-consuming continuing care disputes that drain the public purse?
English Social Services Complaint Procedure also applies to complaints about health trusts. It mentions unreasonable delays in dealing with a complaint & states that a delay of 3 months or more in the investigation of a complaint could be considered unreasonable. The delays that we have experienced far exceed these limits but, at last, the retrospective review to examine the NHS trust's past decision over Chrissy's eligibility for CHC funding was held in June. The decision-makers are reconvening next Monday as there's so much evidence to look through. We should then have their decision in the next few weeks.
We have ample evidence to show that the CHC dispute prolonged Chrissy's distress and suffering prior to her admission for inpatient treatment and assessment, and we're in the process of getting an independent review on this.
It's difficult to say how much the dispute is affecting Chrissy now but there's no doubt that it's still having an impact on her housing options. The CCG states that if it turns out not to be the responsible commissioner once the dispute is settled, it is potentially open to a challenge that it has fettered the relevant responsible commissioner’s discretion by agreeing to a placement and a package of care outside that body’s policies and/or resources...
How extraordinary that public funding works in this way - and why the hell doesn't the CCG settle the dispute? It's been nearly 5 years and they still haven't started the new CHC review. Despite stating in the past that the retro & new reviews are two separate processes & one wouldn't affect the other, they have now u-turned & said they need to complete the retro first.
The CCG got a stay of execution when Chrissy's health took another downturn. Now we're all in limbo because she is still off her food, and her epilepsy meds are still being optimised.
Since Chrissy's bid for local social housing was trumped by someone with a more local connection, the likelihood of her getting suitable social housing is looking increasingly slim. Other rules that apply only in rural communities look set to scupper her chances. I was told today that if someone with the same local connection as Chrissy has been an active applicant for longer than her, they could outbid her despite her priority banding. This frustrates me immensely because we asked about social housing years ago when it was obvious that living in a residential home setting wouldn't meet her complex needs. We were told it was too expensive.
Commissioners continue to press us to compromise on the location but I still can't see how supported living will work if she is not close to us for the reasons I've explained in my previous post http://jgregorysharingsstories.blogspot.co.uk/2013/02/barriers-to-successful-care-in-community.html
None of us have managed to come up with any alternative supportive environments that would allow Chrissy to have her own space - such as a self-contained unit on a campus or an annexe attached to a communal home - that could work without the need for her to live so close to family support.
The multi-disciplinary team are meeting again next week for further discharge planning. Are the delays in finding suitable housing detrimental to Chrissy - or do the benefits of staying where she is while meds are still being changed outweigh the disadvantages of being stuck in an institutionalised environment?
I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger
On the NHS website it suggests that disputes are escalated to PALS or an independent advocacy service. We tried those routes but it kept bouncing back to local resolution. In our experience 'local resolution' is a place where promises are made to get the strategic health authority, who, until recent NHS reorganisations, were responsible for local NHS trusts at regional level, to call off their dogs. Promises made at our local resolution meeting in 2011 got broken then we were simply stonewalled.
No doubt many people fighting for CHC funding, or their relatives, give up because they lose the will to live but the red tape & barriers we've come up against make us even more determined to press on. It's hard to understand why there isn't a better escalation route, say someone working at local level with the local authority & NHS to resolve time-consuming continuing care disputes that drain the public purse?
English Social Services Complaint Procedure also applies to complaints about health trusts. It mentions unreasonable delays in dealing with a complaint & states that a delay of 3 months or more in the investigation of a complaint could be considered unreasonable. The delays that we have experienced far exceed these limits but, at last, the retrospective review to examine the NHS trust's past decision over Chrissy's eligibility for CHC funding was held in June. The decision-makers are reconvening next Monday as there's so much evidence to look through. We should then have their decision in the next few weeks.
We have ample evidence to show that the CHC dispute prolonged Chrissy's distress and suffering prior to her admission for inpatient treatment and assessment, and we're in the process of getting an independent review on this.
It's difficult to say how much the dispute is affecting Chrissy now but there's no doubt that it's still having an impact on her housing options. The CCG states that if it turns out not to be the responsible commissioner once the dispute is settled, it is potentially open to a challenge that it has fettered the relevant responsible commissioner’s discretion by agreeing to a placement and a package of care outside that body’s policies and/or resources...
How extraordinary that public funding works in this way - and why the hell doesn't the CCG settle the dispute? It's been nearly 5 years and they still haven't started the new CHC review. Despite stating in the past that the retro & new reviews are two separate processes & one wouldn't affect the other, they have now u-turned & said they need to complete the retro first.
The CCG got a stay of execution when Chrissy's health took another downturn. Now we're all in limbo because she is still off her food, and her epilepsy meds are still being optimised.
Since Chrissy's bid for local social housing was trumped by someone with a more local connection, the likelihood of her getting suitable social housing is looking increasingly slim. Other rules that apply only in rural communities look set to scupper her chances. I was told today that if someone with the same local connection as Chrissy has been an active applicant for longer than her, they could outbid her despite her priority banding. This frustrates me immensely because we asked about social housing years ago when it was obvious that living in a residential home setting wouldn't meet her complex needs. We were told it was too expensive.
Commissioners continue to press us to compromise on the location but I still can't see how supported living will work if she is not close to us for the reasons I've explained in my previous post http://jgregorysharingsstories.blogspot.co.uk/2013/02/barriers-to-successful-care-in-community.html
None of us have managed to come up with any alternative supportive environments that would allow Chrissy to have her own space - such as a self-contained unit on a campus or an annexe attached to a communal home - that could work without the need for her to live so close to family support.
The multi-disciplinary team are meeting again next week for further discharge planning. Are the delays in finding suitable housing detrimental to Chrissy - or do the benefits of staying where she is while meds are still being changed outweigh the disadvantages of being stuck in an institutionalised environment?
I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger
Sunday, 25 November 2012
Supported Living: Cutting through the Confusion
A supported living option we viewed
We decided some time ago that it would suit Chrissy best to live on her own in the community, with round-the-clock support to help her achieve as much independence as possible - but the choices are mind-boggling and rules about eligibility criteria keep changing. We are just starting down this road and embarking on another steep learning curve!
Here's some information I've gleaned so far, which I've simplified for my own benefit. I hope it helps any of you going down the same road....
Renting privately doesn't work for many people with learning disabilities as standard tenancy agreements only cover a 6 or 12 month period and the landlord can evict the tenant at short notice. It's also unaffordable as most rents now exceed 'local housing allowance' - a term used to describe the maximum amount of housing benefit payable. Another complicating factor is that many people with learning disabilities may need a two-bed house for a carer to stay overnight, or mobility aid adaptations that a landlord wouldn't be prepared to make.
Private sector lease management bypasses some of the obstacles to renting privately. Here, the landlord lets his property to a third party 'Not for Profit' or Registered housing provider that only sublets to disabled tenants. Golden Lane offer a service like this and are affiliated to MENCAP, who would provide the care. Under a private sector leasing arrangement like this, Chrissy's housing benefit claim could then be assessed as exempt accommodation or an excluded tenancy - which means her claim would be excluded from the ordinary rules that cap housing benefit.
In most cases, the only way Chrissy could apply for exemption is if the landlord, or someone acting on his behalf, was prepared to offer a certain amount of care, support or supervision. If she wanted to rent from a private landlord, and care and supervision was independently and wholly commissioned by Social Services, Chrissy could not claim exemption. However if she rented from a registered social landlord, who would contribute to her care and support (I was advised that the amount of support varies but ordinarily around two hours a week) this would fit the bill for exempt accommodation and allow more flexibility on the amount of housing benefit paid.
The care, support and supervision rule deters most private landlords but you would think that it could work for parents if they could afford to buy their child a property to rent from them. Unfortunately, laws governing families renting to disabled relatives are complex and restrictive. A way around the care, support and supervision rule is for Chrissy to rent from a registered housing association. Because the housing association is already regulated by central government and receiving government subsidies it isn't obliged to provide the care and support and it could come from another source. If the housing association don't have anything available they can do a lease deal or buy something outright for Chrissy on the understanding that she would rent it from them.
Our final option, and the one that interests us most, is shared ownership. Chrissy will be on the high rate of DLA for mobility & care again when she leaves hospital, which means she should be eligible to get a small mortgage to be paid for from her benefits. The top-up amount needed to buy something suitable would be paid for by a registered housing association that runs such schemes. They would do all the repairs and maintenance, and it offers Chrissy the most security as she would be a leaseholder. The main drawback for us is that this route is more lengthy and complicated than most, and Chrissy is due to leave the assessment and treatment unit in the next two months.
If we do opt for shared ownership we may have to look at what could be done to support Chrissy here at home with us during the interim period between her discharge and finding a suitable place to live.
Some time in the future we may move to a different area & buy two houses close together with Chrissy in mind. Where we live now is in the middle of nowhere and I've abandoned the idea of her living in the same village. In order to make the most of her independence she will need to be near a town with access to a wide range of amenities and good local transport routes to offer a better choice of staff.
So far we have been offered one option - our local PCT have a vacant bungalow adjacent to two other homes that are singly occupied by women with learning disabilities. They would all be cared for by the same team. The downside of a commissioner providing both housing and care is that the roles would be harder to split if there was a problem say, the care provision failed but the accommodation was fine. This option looks good on the surface, and the bungalow is in a nice area, but I'm uneasy about putting Chrissy completely in the PCT's hands because they've let her down repeatedly in the past. It's also further away from her family home than is preferable.
Another maze to navigate and a big responsibility resting on our shoulders. We need to get it right this time to give Chrissy the life she deserves.
I am a SWAN UK (Syndromes without a Name) blogger
Monday, 19 November 2012
Visiting the Minister for Care in Westminster
Last week, MENCAP and the Challenging Behaviour Foundation invited me and other relatives whose children & siblings have been failed by support services to Westminster to tell Norman Lamb, Minister for Care Services, our stories. It was a great honour to be asked, and it felt good to be heard by someone with the power to change things. I felt a great sense of solidarity with the other relatives and their harrowing testimonies hardened my resolve to ensure the failings that had left Chrissy in so much torment are thoroughly investigated.
It's a relief to know that I’m not alone in feeling angry at the struggles we've faced to get Chrissy happy and settled again. I’m one of the lucky ones - Chrissy hasn't been abused by her carers and I’ve finally got my lovely daughter back. Other relatives told similar encouraging stories that show what can be achieved with the right support. Our battles have been hard-won. Learning disability services had given up on our loved ones and left us not knowing where to turn. As we spoke among ourselves, I learned that I wasn't alone in feeling guilty, as if I had been the one to let my child down.
Norman Lamb stayed beyond the time that had been agreed and said that hearing our stories was as shocking as watching the original Panorama programme about Winterbourne View. We must continue to speak out for the sake of those that have no one to speak out for them. I hope the meeting with Norman Lamb will make a difference, he'll do all he can to ensure lessons are learned, and that adults with learning disabilities are treated with as much dignity and respect as the rest of us.
http://www.mencap.org.uk/news/article/minister-wants-end-places-winterbourne-view
I am a SWAN UK (Syndromes without a Name) blogger
Friday, 10 August 2012
Dear MP.....
Please read Mencap and the Challenging Behaviour Foundation’s ‘Out of sight’ campaign report which tells the stories of James, Joe, Emmanuel, Victoria & my daughter, Chrissy http://www.mencap.org.uk/sites/default/files/documents/Out%20of%20sight%20report%20Easy%20read.pdf In the report, you hear from their families, about the terrible neglect and abuse their loved ones have experienced. Please email your MP today and ask them to take action to make sure this never happens again http://bit.ly/NVtsBS
One of the worst cases in the report is that of 38-year-old James, who has spent five years at an assessment and treatment unit located 150 miles from his home. In this time, James has experienced sexual and physical abuse by other patients, numerous unexplained injuries, neglect by staff and has had multiple medical complaints left untreated. James’ parents have been desperately fighting to have their son moved to a service nearer to home.
Since the BBC’s ‘Panorama’ exposed abuse at the Winterbourne View assessment and treatment centre, last year, Mencap and the Challenging Behaviour Foundation have received 260 reports from families about abuse and neglect of people with a learning disability in similar services.
There are currently hundreds of people with a learning disability in assessment and treatment units like Winterbourne View, and other similar services. Many of these are located hundreds of miles from people’s homes, where they are at particular risk of neglect and abuse. We're lucky, we fought tooth and nail to get Chrissy placed in an assessment and treatment unit only a 30 minute drive from our home, and she visits us every weekend - but until recently service fell far short of expectations. Worse still, commissioners failed to follow up on her progress, ignored communications and did not attend care planning meetings. I've had to take numerous steps force them to take responsibility for meeting Chrissy's complex healthcare needs. A significant contributing factor is a four-year Ordinary Residence funding dispute between the NHS and local authority.
While these units were developed to provide short-stay, specialist treatment for people with a learning disability who have experienced a crisis, in reality, over half (53%) of patients remain for two years or more and nearly a third (31%) stay for more than five years. Assessment and treatment units have been described as “dumping grounds” by learning disability experts. Chrissy has been at her unit for over two-and-a-half years and is nearing the end of her treatment but, despite her complex needs and the Challenging Behaviour Foundation's assertion that it can take 12-18 months to find places in the community for someone like Chrissy, commissioners refuse to start planning her discharge and have repeatedly broken promises. I have had to take on care management responsibility and drive every aspect of Chrissy's care while the NHS commissioners who pay for her treatment turned their backs on her.
Since a change in leadership the hospital are finally doing everything I wanted them to do for Chrissy in the first place, so I DO see the need for assessment and treatment units in crisis situations like the one Chrissy was in but they need to be as Mencap and the Challenging Behaviour Foundation describe, and subject to closer scrutiny by outside services, especially responsible commissioners. The pathways to transition patients into these units need to be far better managed too. After two traumatic residential placement breakdowns, we had to force the NHS trust's hand to get Chrissy into a local unit - they wanted to send her 65 miles away to a unit near Gatwick that had a bed-blocking problem and could give no definite admission dates. They are currently funding Chrissy's place at the assessment and treatment unit on a 'without prejudice' basis.
The government must urgently address these systemic failings in the care of people with a learning disability. Please contact the Secretary of State for Health and urge him to ensure that the government’s final report on Winterbourne View commits to a strong action plan to close large, institutional-style services and develop appropriate local assessment & treatment services for people with a learning disability. What has happened to the people at Winterbourne View, and those in the ‘Out of sight’ report, must not happen to anyone else.
Please also attend an important debate secured by Tom Clarke MP on this issue. It is an end of day adjournment debate on the abuse of people with a learning disability, on Monday 3 September.
Yours sincerely.....
I am a SWAN UK (Syndromes without a Name) blogger
One of the worst cases in the report is that of 38-year-old James, who has spent five years at an assessment and treatment unit located 150 miles from his home. In this time, James has experienced sexual and physical abuse by other patients, numerous unexplained injuries, neglect by staff and has had multiple medical complaints left untreated. James’ parents have been desperately fighting to have their son moved to a service nearer to home.
Since the BBC’s ‘Panorama’ exposed abuse at the Winterbourne View assessment and treatment centre, last year, Mencap and the Challenging Behaviour Foundation have received 260 reports from families about abuse and neglect of people with a learning disability in similar services.
There are currently hundreds of people with a learning disability in assessment and treatment units like Winterbourne View, and other similar services. Many of these are located hundreds of miles from people’s homes, where they are at particular risk of neglect and abuse. We're lucky, we fought tooth and nail to get Chrissy placed in an assessment and treatment unit only a 30 minute drive from our home, and she visits us every weekend - but until recently service fell far short of expectations. Worse still, commissioners failed to follow up on her progress, ignored communications and did not attend care planning meetings. I've had to take numerous steps force them to take responsibility for meeting Chrissy's complex healthcare needs. A significant contributing factor is a four-year Ordinary Residence funding dispute between the NHS and local authority.
While these units were developed to provide short-stay, specialist treatment for people with a learning disability who have experienced a crisis, in reality, over half (53%) of patients remain for two years or more and nearly a third (31%) stay for more than five years. Assessment and treatment units have been described as “dumping grounds” by learning disability experts. Chrissy has been at her unit for over two-and-a-half years and is nearing the end of her treatment but, despite her complex needs and the Challenging Behaviour Foundation's assertion that it can take 12-18 months to find places in the community for someone like Chrissy, commissioners refuse to start planning her discharge and have repeatedly broken promises. I have had to take on care management responsibility and drive every aspect of Chrissy's care while the NHS commissioners who pay for her treatment turned their backs on her.
Since a change in leadership the hospital are finally doing everything I wanted them to do for Chrissy in the first place, so I DO see the need for assessment and treatment units in crisis situations like the one Chrissy was in but they need to be as Mencap and the Challenging Behaviour Foundation describe, and subject to closer scrutiny by outside services, especially responsible commissioners. The pathways to transition patients into these units need to be far better managed too. After two traumatic residential placement breakdowns, we had to force the NHS trust's hand to get Chrissy into a local unit - they wanted to send her 65 miles away to a unit near Gatwick that had a bed-blocking problem and could give no definite admission dates. They are currently funding Chrissy's place at the assessment and treatment unit on a 'without prejudice' basis.
The government must urgently address these systemic failings in the care of people with a learning disability. Please contact the Secretary of State for Health and urge him to ensure that the government’s final report on Winterbourne View commits to a strong action plan to close large, institutional-style services and develop appropriate local assessment & treatment services for people with a learning disability. What has happened to the people at Winterbourne View, and those in the ‘Out of sight’ report, must not happen to anyone else.
Please also attend an important debate secured by Tom Clarke MP on this issue. It is an end of day adjournment debate on the abuse of people with a learning disability, on Monday 3 September.
Yours sincerely.....
I am a SWAN UK (Syndromes without a Name) blogger
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