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

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 & I'm a SWAN (syndromes without a name) blogger


  1. Hi
    I read your article in community care.
    I have spent my work life time looking or housing solutions for people with complex support needs.
    I am confused by your concerns over family renting o your daughter. Can you tell me what has been said, provided this is done correctly it can be straightforward.
    There are also off the shelf shared ownership schemes now through my safe home. Have you contacted them? Where do you live, I may know people able to help.

    1. Hi Jayne,
      Thanks for getting in touch. I was told by someone in Chrissy's commissioning team that the law regarding renting to relatives had changed recently. The only way would be to go through a social landlord & Chrissy's rent would be paid to them from her housing benefit. There was only one social landlord prepared to consider getting involved in a property purchase in our area because housing here is more expensive than average. The costs they charged were astronomical & the commissioners have completely discounted it. As I understand it, there's no guarantee that housing benefit would cover the rent. Exclusion/exemption is discretionary & the social landlords I spoke to said the risk that housing benefit wouldn't cover the rent would have to be underwritten by someone - usually commissioners. They are not prepared to do this. If you know of another way in which we could buy a property & rent it to Chrissy can you send me some information please?
      I have already contacted My Safe Home & completed a mortgage application. It covers less than half the purchase price of a 2-bed house in this area. So a way to cover the additional housing costs would need to be found.
      We've investigated shared ownership schemes but haven't found any that have something in our area.
      Chrissy's commissioners seem as confused about all this as I am - there have been a lot of law changes in this area & no one's seems to be able to keep up with them.
      If you can help & would like to email me it's & I can tell you where I live.