Community Care Magazine: The Postcode Lottery of Care

Following on from my last post with a link to my article in Community Care Magazine, here's one I prepared earlier!

This piece ran 13 years ago when Chrissy was 16, & it's about inconsistency of service levels offered by local authorities.

We had just moved to Buckinghamshire, & the support hours that Chrissy had received in Hertfordshire, where we'd lived previously, were cut in half. Chrissy's needs hadn't changed but the council claimed they 'didn't have a big enough purse.'

http://www.communitycare.co.uk/articles/21/12/2000/29262/losing-out-in-the-postcode-lottery.htm



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Community Care Magazine: The Endless Search for Suitable Housing for My Daughter with Learning Disablities

Community Care, the online magazine for social workers & care professionals, got in touch to ask me to write a piece for them based on my post about barriers to moving Chrissy into appropriate housing in the community. Here's the link. Hope you like it!

http://www.communitycare.co.uk/articles/05/07/2013/119308/the-endless-search-for-suitable-housing-for-my-daughter-with-learning-disabilities.htm




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

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?


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'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

Living with a Rare Chromosome Disorder (2)

Just as I was brimming over with joy about Chrissy getting her life back, it all went belly-up again- but every cloud has a silver lining. Reading through Chrissy’s records and seeing everything that’s happened over the past six years was harrowing but now I'm clearer about what she needs for a better future. Her recent setback is a stark reminder of her fragile hold on stability and the importance of having robust community-based medical support.

Chrissy’s behaviour started to worsen after her antiepileptic, Zonisamide, was in the final stage of being titrated up to 300mg a day. Her moods became very erratic and she turned into a roaring Stalinesque dictator. Then she kept going back to bed and lost her appetite completely. As Chrissy is obsessed with food and eats everything that’s put in front of her, (the opposite of her failure-to-thrive infancy) alarm bells rang.

These symptoms had appeared nine years ago when she was 20 - her platelet count had dropped so low she was rushed to hospital. So this time, I asked for blood tests to be done asap. Lo and behold, her platelets were low again. Platelets help the blood to clot so if the count drops too low it can lead to uncontrolled bleeding. There have been other abnormalities in Chrissy’s blood count over the years, nothing too striking, but at one point her doctors thought she had myelodysplasia, or pre-leukaemia.

So here we go again. This time, her platelet count isn’t low enough to put her at risk but it’s been part of a general downward trend. As any parent knows, there’s nothing worse than seeing your child suffer but knowing you’re helpless to do anything about it. Last weekend Chrissy kept telling me - ‘I feel sick.’ Sometimes she tried to eat but couldn’t bring herself to swallow; other times she refused food and fluids altogether. She has lost 7.5 kg (over a stone) in the past fortnight and constantly has white gunk around her mouth due to dehydration. Her doctors have been on the case but it’s trial and error. Chrissy’s neurologist advised a reduction in Epilim - not the new drug, Zonisamide. I agree with his decision. So many new adjunctive antiepileptics had been tried, and caused horrible side-effects, we were at the end of the road. We can’t keep putting Chrissy through what are effectively drug trials. She’s been on Epilim for years so it’s a case of better the devil we know, but the dose has been high, and, perhaps when Zonisamide was added it tipped her over the edge. We saw Chrissy’s neuro on Friday and he said that Chrissy had been trialled on just about every antiepileptic drug going, so he was reluctant to try any more. He decided to withdrew Clobazam, as that could be making Chrissy nauseous, and should have only been a stop-gap drug while Zonisamide was being titrated up anyway. If Chrissy responds well he will look at tweaking her other anti-epileptic drugs down to try and achieve a better seizure control/quality of life balance.

The sudden deterioration in Chrissy's health has been a rude awakening. I’d been living in hope that one day she would regain the lasting stability she enjoyed during her teens. Now I have to admit it’s unlikely. It was hard enough to stabilise her epilepsy and behaviour but now these other side-effects have to be taken into consideration too.

So until a few days ago, I was going through a period of grief again - bursting into tears at unexpected times, and waking up in the night panicking, and torturing myself with thoughts like ‘how can her body cope with all those drugs going into an empty stomach?’ Then the sun came out, and love and support came pouring in from all sides, and the future started to look rosier again....

In the meantime, a bungalow has come up on the social housing register. It looks promising – in a neighbouring village set in open countryside, five minutes drive from us - and Chrissy would share our GP, who already knows about her. Her Social Worker is 'quietly confident.' We should know by Monday if our bid's been successful.

Supported living still feels like an experiment to me but I'm told it can work for even the most complex and challenging individuals. If it's going to work for Chrissy, it stands a better chance if she's close to her family.

Wish us luck!



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

Frontline Care and Funding Wars

Earlier this year, in our search to uncover the truth behind the ongoing funding dispute over Chrissy's care, I made an official subject access request to view her records.

Two weeks ago we received three big boxes full of paperwork. For several days, each time I walked past them, I eyed them nervously, knowing that once I ripped the first box open I wouldn't be able to rest until I'd gone through the lot...

A week ago on Friday, when I pulled out the first jumble of papers, I was lost. I crouched over them for so long my whole body seized up. When I glanced up at the clock five hours later it was midday and I was still in my dressing gown. I pressed on. A fractured ankle in 2007 from banging her heels on a hard surface; a safeguarding alert where she'd wrongly been given Lorazepam by a trained nurse 'just in case;' an optician receipt - Chrissy had broken her carer's glasses by hitting her in the face. There were many similar incidents recorded from 2007 onwards. I spent the next four days reading the records, scanning in the ones that were relevant to our legal challenge and crying my eyes out.

I'd been made aware of all major safeguarding issues but I was stunned by the level of aggression that Chrissy had displayed towards carers and women she'd lived with. Maybe it had been underplayed so as not to upset me? We get the occasional smack at home but we can normally tell when it's coming and keep a safe distance. If we do get in the firing line the smacks rarely hurt as they lack power or aim. The point is - why had Chrissy (who has the intellectual functioning of a two-year old) been put in a position where she could keep doing this to herself and other people, and what did these behaviours say about her level of distress?

The documentation reveals that Chrissy's carers had struggled to get help from Chrissy's GP and psychiatrist and how they had been left to cope alone with insufficient support. I could see the impossible situation that they'd been put in, the high risk that Chrissy's challenging behaviour posed to herself and others, and why they had been forced to evict her. I read on to a report that described how some of Chrissy's carers were frightened of her and found her so exhausting that they couldn't work consecutive shifts with her. It was even implied in a carefully worded way that some carers had left because of Chrissy.

There's no doubt that Chrissy can be extremely challenging but she can be a delight too and has had a positive impact on many people's lives. It's clear that several of her long-term carers have become attached to her and been profoundly affected by meeting her. Over the years they've commiserated with me over how difficult her life can be but have also told me about happy times they've shared.

Last week, I had a chat with a lady who used to work with Chrissy before she went into hospital. She said: 'Chrissy’s such an amazing person and will always have a place in my heart… It was by working with Chrissy that I knew I had chosen the right career.....so challenging at times but so much more rewarding and satisfying by achieving the smallest of tasks. Please give her a hug from me…'

Later that day a nurse on Chrissy's ward described her in similarly warm terms. 'She's had us all in stitches with her hilarious comments....' she recalled. 'She's got such a fantastic sense of humour!'

One thing's for sure, no one forgets Chrissy once they've met her! Her challenging behaviours can be relentless and very distressing to witness but it crucified me to see her described as someone to be feared.

On the positive side - we got what we wanted from the records. We've uncovered extremely damning evidence that shows what was going on behind the scenes of the funding dispute. We knew that the PCT's 'if Chrissy was in a different 'autism-friendly' environment these behaviours would not occur' argument had failed because it could not be supported legally. Their second argument was even weaker. They acknowledged that Chrissy had had a recognised healthcare need before moving into the area BUT they refused to fund it on the basis that it was a pre-existing need. They were then told BY THEIR OWN SOLICITOR that this did not accord with NHS guidance so instead of coming clean and accepting responsibility, they came up with further ploys to dodge funding responsibility, including trying to pass the buck to two other PCTs. With the pre-existing healthcare needs argument they'd shot themselves in the foot by stating that Chrissy had healthcare needs before she moved into the area. In that case, shouldn't she have been eligible for continuing healthcare funding way before the local authority first applied for it in 2008?

The information we found explains a bizarre reason that Chrissy's psychiatrist gave for refusing to come out when a care home manager phoned her for help - because 'these behaviours aren't new.' Since their arguments to deny CHC funding failed legally the PCT have tried every other trick in the book to stall things. We don't see how they can wriggle out of this now and want an independent review. We will not rest until those responsible are named and shamed. We're appalled by what we've uncovered and how many people, including trained medical professionals, were party to this scandal. We acknowledge that Chrissy is extremely complex and needs high cost support but that's no excuse. We will never forget how funding issues exacerbated her suffering over a prolonged period. If we hadn't fought every inch of the way, God knows how this would have ended.

None of us should forget the wider implications of Chrissy's case - there must be other vulnerable adults, who don't have anyone to fight for them, suffering at the hands of unscrupulous NHS trusts.....


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

Legal Challenges and our Hopes for a Better Future

It's been a tough week and at times I've felt overwhelmed. We've been dealing with solicitors over difficulties with the plans to move Chrissy on, and have seen a return of some of her old challenging behaviours. Issues with the quality of personal care she'd been receiving had resurfaced but, thankfully, they've been resolved again.

We've had crisis times like this throughout Chrissy's life. I'm painfully aware that some quality of personal care problems could be avoided if Chrissy lived with us full-time but, as we experienced this weekend, it could never work for a number of reasons. I discuss this dilemma in a previous blog http://jgregorysharingsstories.blogspot.co.uk/2012/10/living-at-home-again-impossible-dream.html Some adults with a learning disability can thrive in the home setting. Chrissy isn't one of them and this is the case with many adults with a learning disability that display severe challenging behaviours. Even when Chrissy is at her most settled, she is full-on and can't be left unsupervised. Her intellectual functioning is at a similar level to a two-year old's - imagine the difficulties that a stroppy adult-sized toddler would present - and then some! When Chrissy's unsettled, as she was this weekend, her moods are balanced on a knife edge and it's like living in a war zone. As part of our legal challenge, I've been reading through old care records and they're a brutal reminder of what day-to-day life can be like with Chrissy. These behaviours have proved impossible to manage even in residential settings geared up for such challenges.

We hope that the reversion to old behaviours is temporary. As Chrissy's Zonisamide has been gradually upped, she's had spells of wetting herself at night and sleeping excessively - but then those side-effects have worn off in time for the next dose increase. Now it's been increased to its optimum therapeutic level, which seems to have tipped her over the edge. On the unit last week she'd had nosebleeds and kept wanting to go back to bed during the day. When she came home on Friday, she seemed fine at first then her mood kept switching from tears to manic laughter to shouting and demanding things. She took to the floor several times, biting her toes and pulling her hair. She demanded the same things over and over, like a stuck record, but whatever we gave her wasn't enough. She was generally more irritable and destructive, and broke her laptop mouse when she threw her laptop across the room. Ian's bloody brilliant when she gets like this; he's so patient with her, much more so than me. I find these rage episodes and prolonged periods of distress completely draining and they throw up painful feelings - resentment, guilt, pity, anger, grief, fear, helplessness, inadequacy....

Chrissy complained several times that she felt sick and, because she kept getting 'stuck' in one place and couldn't move on, yesterday, she couldn't even settle down to eat. Everything from persuading her to take her medication to getting her into the bath took far longer than usual. Then, when we finally managed to get her into the car and back to the unit at around 5.30pm, she wouldn't move out of the car. These aren't quite the same as her frozen states because she isn't content to sit quietly in her own space. It was upsetting to see her so distressed again but she is still alert and has all her wits about her. In fact, at one point, so determined was she to stay put, that she locked herself in the car. We had keys of course but there's no moving Chrissy when she doesn't want to be moved! We got stuck at the unit for ages, and had to laugh as we swapped places with Chrissy. We thought that if we hid out of sight behind the entrance gates she'd get bored and call us to be let out. Not a bit of it! Eventually her care-worker had a brainwave - to move the car slightly closer just to jolt Chrissy out of her fixed position. It worked but she took to the ground outside and still refused to move. At least we got our car back!

So on to the legal challenge - I've posted previously about the Ordinary Residence and Continuing Healthcare funding dispute, which kicked off after we relocated to a new county when Chrissy moved into Adult Services at 19. The timing of our move and the fact that Chrissy's condition worsened afterwards turned her into a political hot potato. The upshot is that we've had to engage solicitors yet again because the funding dispute is still adversely impacting on her life. As my husband, Ian, puts it: 'If we hadn't kept driving things on, Chrissy would have been condemned to a wretched life.' As the funding dispute started in 2008, it's hard to understand why an independent higher authority haven't been brought in to resolve it by now. It looks like this nearly happened in 2011 but the commissioners intervened by agreeing to a process called 'local resolution.'

A local resolution meeting was held in November 2011 and they promised to put things right. They offered to carry out a retrospective continuing healthcare assessment, which would be a major step towards solving the funding dispute and determining who was responsible for funding Chrissy's care package. They promised to complete it by February 2012. We're still waiting. Now they say Chrissy can stay in hospital until they've completed the assessment and funding responsibility is determined - yet they still haven't specified a definite date......

We are also concerned that if they claim that someone else has funding responsibility, the other official body will appeal, which will then lead to further delays. So we've been forced to bring matters to a head and have engaged solicitors. Last week the commissioners replied to their letter before action. I've spent the past few days correcting facts and omissions in their reply, and adding further evidence to strengthen our case, ready for the solicitors to prepare for the next step. Is what they're doing actually unlawful or just poor practice?

Chrissy's case is further strengthened by a wonderful letter from Mencap. Quotes include: 'It has been extremely difficult for Mencap to understand why the situation has remained stuck for so long.....'The amount of correspondence that Chrissy’s family have had to engage in to try and understand the barriers, and to try to move things forward for their daughter is difficult to believe.....''There has still been no proper assessment of Chrissy’s needs on which to base the planning......' 'The Government is very clear that people with a learning disability should be supported to live in their own communities. There is no reason why Chrissy should not be living in her own home near her family. It is crucial that the accommodation meets her needs and that she gets support from staff who are able to meet her complex health and behaviour needs. It is also crucial that she can get the right input from medical professionals, when needed.....' 'Chrissy should have the same opportunity to enjoy life as other young women her age, with the right support. She should not be living in a unit....' 'I am sure you will agree that it is unacceptable for the situation to continue as it is. I think we can all imagine how damaging and stressful it is for Chrissy and her family.'

Let's hope that we're nearing the end of this damaging chapter in our lives and that the outcome will enable Chrissy to live her life in the way that she'd want to. http://jgregorysharingsstories.blogspot.co.uk/2011/08/how-id-like-my-life-to-be-by-chrissy.html



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