Update on Winterbourne View Out of Sight Campaign

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

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



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

Well....Chrissy's clinicians have deemed her ready for discharge now, just as I was beginning to wonder whether I was kidding myself to think that her behaviour and epilepsy would ever be stable again.

Since the last meds change several weeks ago, every day has been a sunshine day. We're almost at the optimum therapeutic dose of Zonisamide, at which point the stop-gap antiepileptic, Clobazam, will gradually be withdrawn.

It's heartwarming to see 'no seizures' and 'no challenging behaviours' recorded each day in Chrissy's ward/home report. The episodes of inconsolable distress have vanished. Music from her Ipad makes her dance in her chair and her cheeky chuckles ring out around the house. I took the photo above when we were sitting in my car and she had just reached across to stroke my arm lovingly. Simple gestures like that mean the world to me as Chrissy doesn't often instigate affection.

She is having a great time exploring the new ipad she got for her 29th birthday, doing puzzles, building snowmen and causing mayhem in her virtual home. At first she used different fingers and even changed hands to manipulate objects around the screen - but she's learning fast. She has relatively good manual dexterity and loves anything to do with computers.

On our morning walk to the village shop, Chrissy pointed out sights that interested her, including a metal arch over someone’s gate. 'Rainbow!' she cooed, then stood admiring it for a while. I was enchanted.

Chrissy admiring the 'rainbow'
Chrissy still struggles with transitions and needs all our attention but she's content and responsive, which makes our job much more rewarding. She wants to be out there living her life now. The unit do their best, and do take her out, but not as often as she would like. This morning when I asked her to take her medication, she replied: 'When the night staff come!' It's definitely time for her to move on but we've had to involve solicitors to focus commissioners' minds as things were dragging on. This has been the case with each of Chrissy's major transitions over the past few years. Legal aid cuts are brutal but, in this instance, Chrissy's solicitors were able to demonstrate that we had exhausted every other avenue and only turned to them as a last resort. She will, however, have to pay a contribution.

Chrissy's housing options are still unclear but we are finding a way through the maze. One of the biggest barriers we faced was accessing social housing. I was advised to bid on local homes by Chrissy's commissioners but after several bizarre 'admin errors,' a housing officer said that Chrissy wasn't 'well-placed' for general purpose social housing as she was 'unlikely to be thrown out onto the street.' If someone without a learning disability is at the point of discharge from hospital they would be moved to a priority banding..... The very few adapted properties that I've seen on the website are for the elderly only and, although Chrissy moves slowly and cautiously, she doesn't need adaptations for limited mobility. I then learned that there was a supported living panel at our local CC, which we had not been told about. Our local council's policy documents state that social housing for vulnerable adults and those with a learning disability are their priority. This hasn't been our experience and we've put in a Freedom of Information request to identify how many people with a learning disability have been offered social housing in the CC's area over the past year.

We've also made a mortgage application on Chrissy's behalf, which would be paid for from her benefits, and we're still exploring shared ownership schemes through registered social landlords. I had been left to deal with all this confusing information but now I've had enough and forward emails to the commissioners to deal with.

Chrissy finally has a social worker! Perhaps the long-awaited community care assessment will be done now. She must surely benefit from Social Services and NHS commissioners working together but why has it taken so long when the planning process has already taken place?

So, I'm still fighting to get Chrissy an appropriate care and housing package in the community, but the sting has gone out of it because she is so settled and content. This stability was only achieved by her spending time in an assessment and treatment unit and, in our view, the Government's knee-jerk reaction after Winterbourne to close down such units is misguided and dangerous. There's no doubt that big changes needed to be made, not least for assessment and treatment units to live up to their name - to assess and treat their patients - but we have much to thank Chrissy's unit for. They've brought her back to us.

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

Catching up & Moving on

The last time we'd taken Chrissy to her step-nan's (pictured) was over five years ago. The four-hour journey had been gruelling with a distraught Chrissy repeatedly undoing her seat belt, and screaming, self-injuring and wedging herself into tight spaces.

Last weekend's journey was very different. Apart from the odd burst of repetitive questions, Chrissy settled down in the front seat next to Ian and was content to watch the world go by. When we stopped off at a service station she never once tried to escape to explore the numerous glittering attractions we saw en route to the Ladies. Unheard of!

When we arrived at her nan's Chrissy rushed inside to greet her, grinning from ear to ear. 'I never thought we'd see her like this again,' her nan said, all teary eyed. 'I thought we'd lost her.'

I welled up too as I watched Chrissy taking everything in. She had seen her nan earlier this year when she'd come to stay with us, and she knew who she was. I'm not sure that she recognised the house though. Then her face lit up again as she spotted her sister, Alex, who had come down from Manchester. We hadn't told Chrissy she'd be there or she would have obsessed about it on the way up.



Chrissy is always thrilled to see her siblings. Normally, unless she sees someone regularly she struggles to remember them but she always knows who her younger brother, Jamie, and little sister, Alex, are. The evening went well but Chrissy ate voraciously. We are always trying to distract her and discourage her from overeating but at times, she constantly demands food.

Her happy mood gradually dissipated on Saturday. This often happens after she's been particularly bingey. Something kept coming over her - we never know what - but she suddenly becomes distressed for no discernible reason, and starts screaming, twisting her hands, bending her fingers back and pulling her hair, then she snaps out of it and gives us a beaming smile.

Another mum posted something on a forum that reminded me how difficult things once were for us, and for many other parents of children that have this rare disorder:

''My son's behavioural issues/outbursts/tantrums have escalated so intensely that we don't know what to do anymore. When he gets upset, which is often and for no reason, he is un-calmable. He is incapable of self-soothing, and literally needs me to physically calm him down, rubbing him, deep breathing - sometimes yelling to snap him out of his ritualistic obsessing. It's more than I can take right now and I'm not sure what to do. He woke last night with such emotionally disturbing tantrums and terrors that both my husband and I were in tears......''

Although this desperate mum's description propelled me back to dark times, it also made me realise how far we've come. Chrissy's behaviour will always present challenges to people that look after her but we attribute recent improvements to her revised meds regime. She's still on Prozac but off all antipsychotics. Her behavioural outbursts rarely escalate, her overall mood is much happier, and we can take her out. She continues to be far more alert and engaged in what's going on around her. Her hilarious, stream-of-consciousness observations are back too, giving away all our best-kept secrets! 'Nanny blue jacket, grey hair!' 'You don't like dogs do you mummy?' she declared to my mortification as her nan's adored border collie entered the room. 'Ian farts sometimes,' was another random pearler she uttered loudly and clearly in front of his family. She also threw in a few 'bastard shits' and a couple of 'fucks' for good measure.

The visit was a success, despite Chrissy's changeable mood, and seeing her pleasure at being around loved ones has helped me to re-evaluate what she needs from a supported living placement. I yearn with every fibre of my being to keep her close by where I can protect her and see her more often - but it's not about my needs as a mum - it has to be about what's best for Chrissy. Her psychiatrist and a housing adviser suggested that she'd be better off living in a nearby town. Good public transport links and local amenities would give her more choice of staff and activities, and she wouldn't keep bumping into me while she was out and about. I believe the benefits of living in a community that she's familiar with far outweigh the benefits that are being advocated for her living elsewhere. Chrissy would lead a more fulfilled life if her home was in a familiar place where she has connections to the local community and people that love and care about her. To gain these connections in an unfamiliar place would be a very forced and difficult process for someone that needs 24-hour care and functions at the level of a toddler. Are we in danger of using the 'one size fits all' approach to supported living that is all too often the reason why residential placements break down?

And if it is agreed that Chrissy should live in our village, will government policies dictate otherwise? The current housing and support system is failing many people with a learning disability, who face a lack of housing options due to welfare reforms and budget cuts. Housing benefit caps make rent unaffordable and, although Chrissy can apply for exemption, many private landlords won't accept tenants on benefits, let alone one with a learning disability. Social housing is also inaccessible in some rural areas with specific local connection eligibility criteria. Chrissy wasn't considered for the newly built affordable housing in the village because other applicants that have lived and worked here for years have a stronger local connection. Our only hope is that a suitable, reasonably priced house will come up for sale and a registered landlord will agree to purchase it, and rent it out to Chrissy, possibly in a shared ownership capacity. Struggling to unravel all the supported living red tape makes you wonder if it's delivering on its promise of offering more choice, control and inclusion.

Here, an excellent report by Mencap explores the barriers to successful independent living arrangements, and suggests a national strategy for housing people with a learning disability.
http://www.mencap.org.uk/download-housing-report



I am a SWAN UK (Syndromes without a Name) blogger

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

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

Assessment and treatment units

A wonderful weekend with Chrissy. Her sister, Alex, and her nana were staying, & we made a Halloween pumpkin. Chrissy called it a witch! Her nana hadn't seen Chrissy for a few weeks and was amazed at the transformation in her now all the meds changes have been done.

But would this have taken place if Chrissy hadn't gone into an assessment and treatment unit? These units are getting terrible press with the latest Panorama Winterbourne View investigation on TV tonight. Politicians and learning disability charities are calling for these 'dumping grounds' to be decommissioned without delay - but don't we need robust alternatives in place first? Anyone who's read my previous posts will know that we've had our issues with Chrissy's ATU and I'm sure there are lots of awful ones like Winterbourne View - but you can't lump them all together. The truth is, it was her only lifeline. Community-based services failed her time and time again. People that present with the most challenging behaviours usually have complex needs that can't always be met in the community. Support workers need better pay & training, and don't get me started on communication. Many of Chrissy's support workers in the past have barely been able to speak English. The best learning disability psychiatrist Chrissy has ever had is the one at the ATU. It pains me to admit it, as we haven't always seen eye to eye on every aspect of Chrissy's treatment, but she's pretty impressive! Other psychiatrists that Chrissy's had in the community have been, at best, out of their depth &, at worst, haven't had her best interests at heart. In a nutshell, a vulnerable adult with challenging behaviour & complex needs can be extremely difficult to manage in the community. If community learning disability teams were up to the job, why has it taken SEVEN YEARS from the start of her deterioration for Chrissy to recover & be herself again?

We learned at last week's care planning meeting that Chrissy is due to be discharged from the ATU in the next couple of months. I'm very nervous about her leaving the unit's health-focused environment. Her epilepsy is still unstable but I'm hoping it's just a blip while the last of her previous meds leave her system - she can react strongly & paradoxically to even the smallest meds change.

To end on a very upbeat note - at the meeting, all Chrissy's therapists expressed their delight at her progress since the last lot of meds changes. They reported marked improvements in her cognitive skills, attention span & willingness to engage with others. She thoroughly enjoys going out shopping and on woodland walks and it's hard to remember the last time she disrobed during an outburst. These recent, very marked, improvements strengthen our case that she needed meds changes, not simply changes in her environment, to retrieve her quality of life. How on earth could the meds changes have been done in the community with what it has to offer currently? Badly run ATUs are the tip of the iceberg. Closing them down without suitable tried & tested alternatives in place is not the answer.


I am a SWAN UK (Syndromes without a Name) blogger

Living at Home again: An Impossible Dream?

West Meon Church

A magical morning with Chrissy. We walked to the village shop for a newspaper and Maltesers. Chrissy behaved perfectly so we stopped for a photo-call in the churchyard. Later as we looked through the pictures on her laptop, Chrissy's face was wreathed in smiles as I showed her how to move the cursors around. She giggled as she made herself disappear then re-appear on the screen – now you see me, now you don’t!


Having it all - enjoying lunch, Cbeebies and today's photos!

My last post was about taking a stand. I can reveal now that it was over Chrissy's Quetiapine - I was so desperate for her to come off it that I stopped it for three days on holiday. Then I admitted what I'd done to the ATU and begged them not to re-introduce it as we had seen improvements in Chrissy's behaviour and mood. It was a rash decision on my part and I've explained my rationale on here before. I had no concerns about the risks as we had seen similar improvements when the ATU had 'forgotten' to give Chrissy half the prescribed dose for a fortnight. For reasons I completely understand her doctors reinstated the drug but immediately began to 'review it downwards.’ (They need to monitor effects.) Chrissy is now on only 50mg once a day. So far so good, although her ward nurse told me that Chrissy had been slightly more agitated at meal-times lately, bending her fingers back and asking repetitive questions about food. However, her nurses have been able to distract her.

As the weekend's gone on, Chrissy's had her moments but she's been relatively easy to pacify and fully engaged in everything we've been doing. As a general reflection of her improved mood over recent weeks, her hair is growing back and looking more lustrous (she isn't pulling it out), and her body is no longer marked by self-injury.

Now Chrissy's behaviour has settled down, I’m feeling more torn than ever about her future. We’re no closer to finding a way to set up the bricks and mortar part of the single service unit option (where Chrissy lives on her own with 24-hour support). You've seen from previous posts how some issues that crop up in residential care haunt me. Now I’m wondering again if there's any way we could make it work for Chrissy to live with us permanently.

Ian doesn't believe that living with us would be the best thing for Chrissy. He fears we could go back to square one if her condition were to deteriorate again. As there's every chance, given her history, that this could happen, anything that's put in place would need to be watertight to minimise the risks of further traumatic moves. It may sound selfish but we're in our fifties and enjoying more freedom now that our children have grown up. It would serve no one if we were to go backwards to a time when Chrissy's outbursts ruled our lives and I felt like a prisoner in my own home with her too unsettled to take out or leave with a care-worker. We would be setting ourselves up to fail if we were propelled back into the fray of pointless crisis meetings and battles to get effective medical treatment and support. So there would need to be strong contingency plans in place, for example, an immediate return to the ATU for further assessment and, if necessary, treatment - and how enforceable would those plans be? I’ve lost all faith in Chrissy's commissioners, with their endless broken promises and buck-passing.

Another question is whether we could devote the time, energy and patience to manage Chrissy's needs as they should be managed and, the biggie that terrifies all parents of disabled children - what will happen when we're gone? As one of the provisions for her future care, shouldn't we ensure that she is settled somewhere that doesn't depend on us being around?

Anyway, it’s all hypothetical right now and I may have blogged myself out of it! Ian’s far more pragmatic than me – I follow my heart but as my book title says sometimes ‘love isn’t enough.’ It’s early days and I'm jumping the gun – a date for discharge from the ATU has yet to be agreed. Chrissy's epilepsy is still not as controlled as her doctors would like it to be and if another anti-epileptic drug is trialled she will need to stay in the ATU for further monitoring as she's had such nasty reactions to the last two.

At the next care planning meeting on 22 October I propose that we ask commissioners to suggest a support package template if having Chrissy back home is a route that Ian and I could agree to explore.....

Since I published this post I was given more food for thought when another mum of a child with learning disabilities wrote a piece for the Daily Mail that included her take on the residential care dilemma. She questions whether it would be cruel to leave her daughter unprepared and unprotected when her parents die: http://www.dailymail.co.uk/femail/article-2219305/The-daughter-taught-meaning--love-Lady-Astor-pays-moving-tribute-autistic-little-girl.html


I am a SWAN UK (Syndromes without a Name) blogger

Another Outing & Feeling Torn...

Out for Sunday dinner with sister & cousins

Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.

The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.

'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.

On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!

Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.

During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.

Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.



After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'

Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.

I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.


I am a SWAN UK (Syndromes without a Name) blogger

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