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

A Special Celebration & Undiagnosed Children's Day

When Chrissy arrived during the hottest April for 100 years, I was the proudest mum in the world. I was 23 and a first-time mum. It felt like my greatest achievement ever.

My baby looked flawless and her beautiful dark eyes seemed to take in every detail of her surroundings. In her little perspex cot on the maternity ward she waved her hands around so energetically that I called her our 'air traffic controller.'

Then the dark shadows started pressing in. Thank God we can't see what lies ahead of us.....

Like many children with undiagnosed genetic conditions, Chrissy was a failure to thrive baby. She struggled to feed and gain weight, and was floppy and sleepy - but she was a mass of contradictions. Mostly she was sunny-natured, alert and content to coo and watch the world go by but, even in infancy, she had prolonged spells of inconsolable screaming, and no one knew why. The rest is history and detailed in my book: 'Bringing Up a Challenging Child.... http://www.jkp.com/catalogue/book/9781853028748

Although we now know the cause of Chrissy's problems, she still remains quite an enigma to us and to her clinicians, despite spending three years in an assessment and treatment unit. We know her chromosome disorder causes hugely variable effects but her learning disabilities are significantly worse than most people affected by 1q21.1 microdeletion, even those with a larger area of deleted genes.

So where are we 29 years on?

We have another CPA (care plan approach meeting) coming up on Monday that we never expected to have. Chrissy has now been in the unit for over three years and is ready for discharge but despite my monumental efforts to find solutions and move things forward, she is still stuck there. The Government is very clear that people with a learning disability should be supported to live in their own communities so it is difficult to understand why there are so many barriers in place. I feel like I'm stuck too. It has been left to me to drive it all, and I now spend most of my time on this. It's the same with every major transition, eg when she went into the unit I was driven to the brink of despair along with her. Not only was I in pieces over her suffering but I fought epic battles to get her into hospital. Why does it have to be like this?

Mencap are very interested in Chrissy, and are finding it hard to understand why the situation has dragged on for so long. They are incredulous about the amount of correspondence that I've had to engage in to try and understand the barriers, and to try to move things forward for Chrissy. Her case has been brought to the attention of Chris Bull MP, who is leading the Joint Improvement Programme to move people out of assessment and treatment units after Winterbourne, and Norman Lamb MP, Minister for Care, who has asked to be kept informed of progress relating to Chrissy's case.

Our experiences are echoed by this excellent article highlighting flaws in the Government's plans to move people with learning disabilities and challenging behaviour out of assessment & treatment units into community-based settings:
http://www.communitycare.co.uk/articles/10/04/2013/119078/dont-ignore-housing-in-response-to-winterbourne.htm

Chrissy's most recent (and hopefully last for now) medication change has been from the antiepileptic, Keppra, to Zonisamide. Because she had three seizures in a row after Keppra was withdrawn, Clobazam, a benzodiazepine derivative like Valium, was added to Zonisamide and Epilim. Clobazam will be withdrawn when Zonisamide is titrated up to the therapeutic dose. Chrissy is already on the maximum therapeutic dose of Epilim. I've discussed seizure control/quality of life and my fears about the effects of medication on Chrissy's mood, health and general well-being in previous posts. Clobazam's sedative effect is dragging Chrissy down. I can't wait for it to end as it breaks my heart to see another drug stealing away her personality, and sapping her energy and intellect. I have to remind myself how far she's come - she rarely has screaming outbursts now and, as the effects of her medication wear off during the day, Chrissy is her old self again. It's a delight to see her enjoying jigsaw puzzles again, a skill she excelled at as a child.



Now Chrissy is more aware, she says with increasing frequency: 'I don't want to go back to the hospital.' I have sleepless nights, guilt trips and anxiety attacks over how she must feel living in a locked ward for so long, her suffering and disorientation from the effects of different medications, what she's gone through over the years, what the future holds for her etc. Of course I can only imagine how I'd feel in her situation but, no matter how hard I try to banish those thoughts, they haunt me. It would be such a relief to see her settled again near her family where we can be more involved on a daily basis and help with her support. It's the least she deserves.

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger

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