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

'The Difficulty of the Challenge ahead should not deter us from having High Aspirations.'

At nanny's up north
Last week you may remember I blogged about a bungalow that had come up on the social housing register in a neighbouring village. It looked very likely that Chrissy would be successful so her MDT team and I swung into action. Last Thursday 14 of us sat round a table to thrash out details of the support package Chrissy will need in the community. I felt immensely reassured when it was agreed that there would be a bed for Chrissy at the assessment & treatment unit should a crisis occur during the transition stage that meant she needed to return there. Also, it was agreed that if her condition were to become unstable again in future there would be no delays in admitting her for inpatient treatment & assessment again, as there were before.

We even discussed finer details about the need for flooring to be the same throughout to enable Chrissy to move around as independently as possible. She trips on threshold strips between rooms and finds changes in the appearance of different surfaces disorientating. As ideas about suitable robust furnishings etc were bounced around and the issue regarding platelet count and Chrissy's meds sensitivities were discussed her psychiatrist said to me 'you know her so well.' Ridiculously I felt tears well up. It has taken me nearly 30 years to get to this point - for an MDT to see what I see and to fully understand the complexity of her needs. Often the term 'complex needs' is bandied about without the true nature of those needs really being identified and addressed. Due to the fluctuating nature of Chrissy’s symptoms and behaviours, previous assessments have provided mere snapshots of the whole picture but now she has spent so much time as an inpatient, there is ample documentation to inform better treatment and a more holistic view of her needs for the future.

After the meeting I felt an overwhelming sense of relief that finally Chrissy will get what she needs to lead the happiest and fullest life possible.

Then, today I had some bad news - another more local applicant has got the bungalow in the neighbouring village. Local connection trumps priority banding, which could well rule out anywhere local unless it's on our doorstep. Each English housing authority must have an "allocation scheme" for determining priorities. We were told that, in this case, S106 Planning Obligation applies in that applicants must have strong local connections to local parishes. Unfortunately for us, the first priority is to applicants who live in the parish where the accommodation is rather than neighbouring parishes.

I was upset that we hadn’t been informed and I’d had to find out by chasing it up, and told the allocation officer so. She said they didn’t ‘have’ to tell applicants if they had been unsuccessful and spouted the S106 Planning Obligations at me. I kept telling her that I understood the rationale behind the local connection criteria but she chose to miss the point and kept repeating the S106 regulations. In the end I asked her if she was robot…... So frustrating! She knew the that there was multi-agency working involved, who needed to know the outcome of Chrissy’s bid as soon as possible so they could plan her support. Other members of last week's MDT were as gobsmacked as I was, We had all been on tenterhooks ready to act on the outcome of our bid. The allocation officer's approach was not in the interests of joint-working, and I'm told that someone will be raising the issue with her Housing Manager.

Despite the setback, our aim is to have Chrissy settled into supported living by October. She's eating better and we are awaiting results of blood tests but her moods are still very volatile and unpredictable. At the weekend we took her up north to see her nanny. The plan was to go out for a meal on Saturday night for an early Father’s Day celebration. As we’d enjoyed an uneventful pub lunch together last Thursday I was hopeful that it will all turn out fine. The journey to Chrissy's nanny's was OK but Chrissy kicked off after we got there then it all escalated on the Saturday. She had lovely moments, as Chrissy often does but her moods switched so suddenly our nerves were in shreds. She stripped off a couple of times – behaviours we hadn’t seen in a while - so we decided not to risk the meal out. I stayed home with Chrissy while Ian, Alex and Ian’s mum went out.

The next day, Chrissy kept getting ‘stuck’ with transitions. We thought we’d get stranded there but we did eventually get her into the car around tea-time, and the drive home was relatively peaceful.

Discussing the visit with her little sister; Alex, was thought-provoking. Alex said I was ‘deluded’ because I keep trying to take Chrissy out with us when it nearly always ends badly. I don’t think it nearly always ends badly but I can understand her perception that it does! I do try to assess the risks before I take her anywhere but she’s so unpredictable at times….. I tried to explain to Alex that if I stopped trying to take Chrissy out I would be giving up on her, and when it does work, we rejoice! This comment by Chrissy’s positive behavioural support team from 2009 sums up the approach that I believe in:

‘Clearly, Chrissy has a well-established history of being the person that she is, and experiencing the world as she has. The goal for her to become a more active and engaged person, whose daily routines are rich and varied, may not be easily achieved. Nonetheless, the difficulty of the challenge ahead should not deter us from having high aspirations.’

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger