Chrissy's New Home

We've been very busy getting Chrissy's new bungalow ready for her.

She is on her way there now. Very excited!

Long-time readers of this blog will know what a fight we've had to get to this stage in her life. She spent over four years in an assessment & treatment unit, & now she's ready to face the world again.

Let's hope the world is ready for Chrissy!

Fingers crossed that she will fall in love with her lovely new bungalow on the outskirts of Winchester city centre. It's going to be a huge change from living on a locked ward. She will have two carers with her at all times, which will enable her to live as independently as she can.

Watch this space....

Ups and Downs

The roller-coaster ride continues! I'm feeling more optimistic again as there's been progress on all fronts.

Chrissy made it home yesterday! It's been a real struggle to get her up, bathed, dressed and out so all credit to the ward staff for getting her here.

Last week I had a 'mum meltdown' when I saw the wretched state Chrissy was in, & the only solution I could think of was to keep her at home until suitable housing was found. Now we've had another discharge planning meeting and seen the neurologist, I'm able to take a step back and make a more considered judgement. The neurologist has attributed the changes in Chrissy to Zonisamide, so it's being withdrawn but we're likely to see clusters of seizures. I'm not sure how well I could manage these at home and if I, alone, had decided to bring her home, it could all blow up in my face if I put her at risk. At least in the assessment & treatment unit there are always medical staff somewhere on the site.

The urge to kidnap Chrissy & protect her from harm at all costs grips me every so often. It's an irrational, but all-consuming impulse that made me sympathise with Sally Roberts, who ran away with her son to stop him receiving life-saving radiotherapy because she feared it could do him more harm than good. http://www.telegraph.co.uk/health/healthnews/9733803/Sally-Roberts-runaway-mother-will-allow-radiotherapy-if-sons-cancer-is-back.html Also, if Chrissy came home her place on the ward would still have to be paid for by the NHS so we need to do this properly and plan each step with her multi-disciplinary team.

So now I've had the opportunity to air my concerns to the neurologist and other professionals involved in supporting Chrissy I can see light at the end of the tunnel again. Zonisamide is slowly being withdrawn. Chrissy's had two seizures, but one of those was on 1 August when she was on the full dose of Zonisamide. She had the other seizure here in the early hours of this morning. Both seizures were one-offs & lasted around 30 seconds. I am concerned about what next with her epilepsy meds. In the past her seizures haven't been managed by Epilim alone but the neurologist said there is scope to increase it. Overall, on balance, would it do her more harm to increase her regular epilepsy meds - or add secondary antiepileptics - or allow her to have runs of seizures & use rescue meds? These runs of seizures used to only occur around twice a month but they've been suppressed by meds so I'm not sure what her natural pattern is anymore. I don't know anything about the long-term side-effects of using rescue meds at the frequency Chrissy would need. The assessment & treatment unit still use PRN Diazepam, but care providers I've spoken to use buccal midazolam, which is given into the buccal cavity (the side of the mouth between the gum & cheek). I wonder why the latter has never been tried for Chrissy & which would work best? These are questions I need to ask the neurologist at her next appointment.

Progress too on moving into the community - yesterday we met with someone from a specialist housing association for people with disabilities and mental health problems and a potential care provider. We were very impressed with each of their approaches and the obvious passion they showed for supporting vulnerable adults to live as full a life as possible. With the aid of grants, the not-for-profit housing association would purchase a share in a property of our choice, given various conditions are met. The other part of the property would be mortgaged with a specialist mortgage company. As I said in my previous blog post, the budget covers a house we've seen in the local area.

The tendering process for providing the care package is now well underway. The plan is for decisions to be made early in September. The more I learn about supported living the more I realise it will be very different to any other service that Chrissy's lived in. It will be a huge challenge and a steep learning curve. Chrissy has no idea of what's in store as she wouldn't understand the concept - but I'm really excited! Bring it on....:)

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

Being Chrissy's mum

A beautiful day...

But behind the scenes, I'm struggling with feelings of sadness and loss. We were so thrilled to get Chrissy back at the end of last year - to see the return of her zest for life and her enthusiasm for doing jigsaw puzzles, to take her on holiday, out with family, and shopping for new shoes, her grandma's reaction when we took her up north to visit her for the first time in years.....

Now, Chrissy's slipped away from us again and I'm gripped by the green-eyed monster whenever I see or hear about other adults with learning disabilities going out with their parents. It's routine for many such families but for us, outings and holidays with Chrissy are rare and precious events, often fraught with drama, to be celebrated when they go well. Chrissy just can't manage them at the moment and I realise that we're running out of treatment options. Her epilepsy no longer responds to monotherapy and nearly every secondary antiepileptic drug out there has been tried. She is so acutely sensitive to the neurological mayhem these drugs can cause that they stop her living her life. She isn't complying with bathing, teeth-cleaning etc and is still refusing food. Mood swings continue to be marked - one minute smiling and calm, the next screaming and shouting. She is disrobing on the unit but we haven't seen this at home - just shoes and socks off. She has bruises all over her body again from self-injurious behaviour - the only way she can express her distress. Two weeks ago I'd noticed bruising on her neck & had to raise my concerns at a higher level. I've never seen bruising there before & we're now awaiting the outcome of further investigations into how & when it happened. The explanation I got was too vague for comfort.

The weekend before last when that picture was taken Chrissy was so excited to see her brother, Jamie. His girlfriend, Penny, looks a bit like her sister, Alex. Chrissy thought she WAS Alex - & not just fleetingly. When Alex herself turned up later, Jamie and Penny had left. Chrissy transferred the name seamlessly to the real Alex. I'm uneasy about her confusion. She's always known who close family are even if she forgets other people's names. Another point to mention to her neurologist on Thursday when her antiepileptics are reviewed. The deterioration in Chrissy's health & mental state is something that he will be trying to resolve. The unit has no epilepsy specialists - the neurologist is based at a local NHS hospital. There's nothing more the unit can do for her now and, given the current situation, it's detrimental for her to stay there. So why is she still there?

Some of the housing barriers we've faced have shifted but new ones have popped up. We made a successful bid on a council house in the village but, although we were never given the chance to view it inside, we went with the professionals' views that it was unsuitable due to a number of safety issues in relation to where it was situated and the internal layout. The more housing options we consider the clearer we are about non-negotiables but it's hard to keep having your hopes raised only to have them dashed again. There are very few houses that become available in this area but Chrissy still has priority banding so I will keep checking the social housing website. The other option that's starting to look promising is shared ownership. A specialist housing association has finally come on board and we're having discussions about a house for sale nearby that meets their budgetary requirements. They are concerned about the noise impact on neighbours from any house with a party wall, even with sound-proofing, but a detached property is out of the question due to cost. The noise/disruption to neighbours issue must be a common theme with most people being moved out of assessment and treatment units into supported living and the Winterbourne View Joint Improvement Programme needs to address this.

The tendering process for providing the care package is also moving painfully slowly. I know we'll get there eventually but Chrissy has now spent 3 1/2 years in a locked ward. "What must it be like for her?" I asked Ian recently in a tearful moment. "We'll never know," he said. "You try to put yourself in her shoes but you can't see it like she does and there's no point even speculating."

He's right of course and I need to get a grip - but what mum wouldn't feel like I do? My heart is always at war with my head. I long to kidnap Chrissy and bring her home but I know the situation would be unmanageable, and certainly not in her best interests.

Last week Alex asked: "Do you ever resent Chrissy?"

"No," I answered as honestly as I could. "None of this is her fault. It's the situation I resent."

Reflecting on this question today I can recall times when I've felt fiercely resentful, but only in passing, the same way that I resent Ian when he keeps does something infuriating no matter how many times I ask him not to - like dumping his work briefcase on the kitchen floor!

Alex has just started work as a tutor at a unique school for children with autism, using ABA (Applied Behaviour Analysis) http://www.ambitiousaboutautism.org.uk/page/treehouse_school/teachingandlearning/aba.cfm She's very excited about this new opportunity. She has always felt helpless in the face of Chrissy's suffering, even as a small child. Now she feels able to channel her conflicting emotions, and to use her valuable family experiences and training as a psychologist and teacher to improve the lives of other young people who struggle with autism and learning disabilities. Perhaps we can, in consultation with Chrissy's support team, try some ABA strategies once she moves into supported living.

Naively perhaps, I'd once hoped that similar autism-specific approaches would be used in assessment & treatment units & residential homes that claim to specialise in autism. Maybe one day.....



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

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?


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

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

What Price Integration?

Alone in a crowd - with Team GB (Genetic Blip)

Thirty years after the drive to move people with learning disabilities out of austere, Victorian long-stay hospitals back into the community, could they once again, be victims of Government ideology gone too far?

A definition of supported living is 'persons with disabilities living where and with whom they want, for as long as they want, with the ongoing support needed to sustain that choice.' Nearly every Government policy supports the principles behind it but, as I've blogged previously, recent spending cuts and policy changes are blocking us at every turn. http://jgregorysharingsstories.blogspot.co.uk/2013/02/barriers-to-successful-care-in-community.html

The first supported living option we were shown was a bungalow in a cluster of three. I liked the secluded setting but, as it was too far from Chrissy's family home, I asked if there was anything similar nearer us. I was told: "Oh no, this is a one off; it was converted into three bungalows from one residential home. Ordinarily, we would never put three homes for people with a learning disability together like this as it stigmatises them, and makes them stand out in their local community."

I get the theory behind integration but, in practice, does it always work within the bigger framework of a person's needs? If Chrissy could speak for herself, I believe she'd say that her community needs to be small and contained, with lots of structure and routine, around people she knows that cherish her and accept her as she is and treat her with dignity. Chrissy's moods and health are balanced on a knife-edge. By her very nature, she segregates herself. Sometimes she loves to socialise and at other times she truly is alone in a crowd. So what would living in the wider community offer her that a smaller more secluded community couldn't? The big unpredictable space teeming with faces, sights, sounds and multiple choices that we call 'The Community' is anathema for many people with severe autism.

Last week I spoke to a parent who'd achieved my dream of having her child in a supported living setting close to her home. Prior to this, her son's complex/challenging needs had led to residential placement breakdowns - as Chrissy's had. When he'd first moved into the same street as his family, she'd told me 'it's as good as it gets.' It became the ideal I strove for and I wanted to know how she'd achieved it, but after hearing what she had to say I'm thinking: 'should I be careful what I wish for?'

"Jane, our kids are too 'special' for supported living and would be safer, and have a better life on a campus-like set-up - similar to where Chrissy is now but more of a little community," she said. "Like a retirement village but for people with learning disabilities and complex needs. As their challenging behaviour can be very disruptive to others they share with, they could live in their own home in the village, and there would be communal areas with other things going on that they could access if they chose to. They would each have their own staff team but back-up would be on hand."

Of course the wider community would be accessible too but sometimes it's in our children's best interests to keep them within certain confines to ensure their safety and maintain their dignity. Unfortunately, these core and cluster housing models are few and far between. The small rural community-based setting that she was describing sounds similar to St Elizabeth's School, which one of the children in 'Born to Be Different' attended http://www.channel4.com/programmes/born-to-be-different Chrissy, who'd been a termly boarder from the age of 14, and had been so happy there. It was geared up to the needs of its complex little pupils, and even had its own medical team to monitor their epilepsy. Specialists from top hospitals, like Great Ormond Street, routinely visited St Elizabeth's to see patients. It meant we no longer had to put Chrissy through the ordeal of attending hospital appointments in London.

The parent I spoke to explained why a similar setting, albeit one with single core residences, would be better for her son than the community-based set-up he's in now.

"He doesn't see the community like we do," she said. "He has a thing about paper and, if he spots a sweet wrapper or something blowing in the road, he will chase it, oblivious to the danger posed by passing cars. As he's a grown man, it's impossible to stop him once his mind is set on something. He has destroyed countless washing machines in his home because he's obsessed with taking them apart, and he's chucked stuff over the fence into his neighbour's garden because he can't stand the noise from her small children."

As we'd had difficulties in the past with community-based medical support from a learning disability team I asked what her experiences had been.

"Someone in the team keeps going off on long-term sick leave, so there's no continuity of care in one key area and we've had a battle to get a good psychologist. Support workers have felt abandoned and isolated because they haven't been given adequate back-up."

So can supported living work for all people with learning disabilities, even those with the most complex/challenging needs?

The prevailing ethos is that, with the right 'person-centred, flexible, bespoke support package' in place, it can. And if such an alluring support package does become available for Chrissy during these times of austerity? Well, I guess we'll have to wait and see...

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

Barriers to Successful Care in the Community

Chrissy reading her Person-centred Plan
Since Winterbourne the Government has set up an action plan called a ‘'Joint Improvement Programme' to support local areas to provide ‘swift and sustainable action to ensure that services are personalised, safe and local.’ They want to move people out of assessment and treatment units and back into the community but our experiences demonstrate that the infrastructure just isn’t there. These individuals often have very complex needs and there are too many barriers in place that limit their chances of ending up in successful community placements.

Last Wednesday I was grateful for the opportunity to tell Chris Bull MP, who is the head of the team implementing the Joint Improvement Programme, about the barriers that Chrissy is facing.

Firstly, the team need to examine barriers that cause community-based placements to break down in the first place.

Ordinary Residence and Continuing Healthcare disputes: When we moved to Hampshire in 2003, Chrissy’s care management responsibility wasn't transferred correctly, and her care was still managed by a council based 80 miles away. She has never had a local social worker. The arguments between this council and our local PCT led to gaps in case management and poor continuity of care. The problems escalated when Chrissy’s condition deteriorated, which led to an emergency move to a residential home in a different county. I believe that the funding dispute played a key part in Chrissy’s admission onto the unit in the first place because the PCT did not accept that she had a primary health need and she was denied appropriate treatment. For example, until Chrissy entered the unit our attempts to get a second opinion on her medication were continually blocked.

Lack of a cohesive multi-displinary approach and inadequate medical support: Whenever Chrissy went through crisis periods in the community, opinion was divided between her family, staff and the local learning disability team as everyone struggled to cope. Chrissy is described as having challenging behaviours and highly complex needs but this only scratches the surface. For example, her epilepsy, extreme behavioural reactions to medication and history of life-threatening blood count problems made managing even small medication changes in the community very tricky. However, there was little infrastructure to support care staff, who frequently reported that they felt out of their depth. In the last community where Chrissy lived there was no acute service from the local learning disability team, which meant that when she was going through a crisis period, she wasn’t able to access an emergency appointment with her psychiatrist. In our experience learning disability teams need to use a more person-centred approach and listen to families more. Parents usually know their child’s medical history better than anyone. It hasn’t helped our situation that medical records are missing from Chrissy's two most crucial hospital stays.

Frequent home moves: Since we moved to Hampshire 10 years ago, Chrissy has moved home four times. Inadequate infrastructure in the community resulted in her eviction from a care home in 2008. Most residential care homes are privately run, which makes already vulnerable people even more vulnerable. Who would have thought that people with learning disabilities in privately-run care homes have fewer rights than the average tenant? We discovered this cruel injustice in 2009 when Chrissy was given 28 days’ notice after an incident that had resulted from a clear failure on the part of others to provide for her at her level of need and risk. Chrissy had no rights and was offered no representation at the POVA meetings held regarding the incident.

Cost and complexity of accessing local housing: Cost is the biggest barrier to moving Chrissy into a successful community placement and this is probably the case with many other vulnerable adults. Yet it would be far cheaper to get it right in the first place than to keep someone for more than three years in an assessment and treatment unit. The government has long been committed to the idea of care in the community – but whose community? If the individual’s family lives in an area where housing is more costly to rent or buy than average – tough! Last year the commissioners said that they would set up the ‘bespoke’ service that Chrissy needs and would be looking to engage with a Registered Social Landlord to buy a property off the open market. They then advised us that Housing Benefit doesn’t cover the cost of rents in our locality. Also Housing Benefit is calculated on a per person basis and Chrissy needs a sleep-in carer, which means two bedrooms. She is disadvantaged because she will have to meet the rent payment on her own and Housing Benefit won’t cover it.

We looked at buying Chrissy a house ourselves and renting it to her but there are new, confusing barriers in place there too. Shared ownership schemes were another option we explored but there was nothing available in our locality. All the different housing options are incredibly complicated and it’s another field, along with understanding how Decision Support Tools and Ordinary Residence work, that family carers have to become experts in as we are left to do most of the research. A friend looked at me in disbelief when I told her that doing all this for Chrissy is like having another job but that's how it is, especially during transitions like this move from the unit. I need an expert to guide me through the different options as it’s such a maze - and the rules keep changing! It’s unfortunate timing for us – the recent cuts and policy changes seem to have blocked all our avenues for accessing appropriate housing in the community.

We’ve explored private sector lease management through Registered Social Landlords that only sublet to disabled tenants but the rents they charge are way too high to be covered by Housing Benefit. Chrissy’s claim should be ‘exempt’ or excluded from the ordinary rules that cap Housing Benefit but the calculations that we’ve been given still fall short and the commissioners have told us that the only way we could access Registered Social Landlords is through renting from the council as it would be more affordable.

Unfortunately, we've yet to find any local social housing that will meet Chrissy’s complex needs. Most of the two-bed properties that she’s eligible for are flats in confined areas with either no garden or communal gardens. Chrissy can disrobe, thrash about and make lots of noise for prolonged periods when she's distressed. These challenging behaviours would be seen as a nuisance in a confined or overlooked area and could cause her, at best to be shunned, at worst, evicted - her previous eviction was due to the impact of her behaviour on other people she lived with.

The commissioners argue that we'd have more options if we were to consider a wider area and that Chrissy doesn’t need to live locally because the Campus Project (the move from long-stay hospitals over 20 years ago) ‘moved people with a variety of highly complex needs and they have successfully built community links.’ Really? That's quite a generalising claim and hard to prove. Given Chrissy’s challenging behaviour, limited abilities and autism, she would struggle to build community relationships and take part in local social activities in an unfamiliar area, even with the best of carers. There should always be compelling reasons for sending any individual with a learning disability out of area, and Ian and I believe that, due to her condition, if a single service supported living setup is going to work, Chrissy will need to be as close as possible to family support. As detailed in her Person-centred Plan, her family relationships are important to her, and are the only enduring ones she has. She lives for her visits home, which could be built in to her everyday life if she lived locally. We would also be on hand to provide back-up in emergencies.

Chrissy has been staying at her family home once a week for the past 10 years since we moved to Hampshire but when a rare opportunity for her to move into local social housing came up, she was denied it. If, as we'd requested, the discharge planning process had started earlier she may have been moved to a higher priority banding in time but in fact it's only happened in the last couple of weeks. We were also told by a Housing Officer that Chrissy wasn’t eligible because she hadn’t lived in the locality full-time, which seems unjust considering that, given the ability to express her preferences, Chrissy would have chosen to live locally from the start. Don't get me wrong, I appreciate that she's 28 and needs as much independence as possible for someone with her level of functioning, but the community near her family home is the only one, other than the unit, that she knows. People recognise her and stop to chat when I take her to the small local shop. Large supermarkets with their fluorescent lighting, crowds and vast array of goods, such as those in urban areas, flood Chrissy's senses and can cause her to erupt into prolonged screaming, self-injurious outbursts.

Good GP support is also crucial. When Chrissy was a child we lived in an urban area and our local surgery was large with a high turnover of staff. Chrissy’s GP didn’t know who she was when we called him out on an emergency. Here, our local GP knows our family and is aware of Chrissy's rare condition.

Moving Chrissy to an unfamiliar urban community is likely to cause her immense distress and result in a deterioration in her behaviour. Any move is going to be stressful for her as we’ve seen in the past. Chrissy’s condition makes her react in extreme ways to any small changes in her medication or her environment. An inappropriate move could put the whole supported living setup in jeopardy and she could end up back on the unit.

We don’t want Chrissy to be institutionalised but, frankly, she would be safer and happier staying in the small supportive community at the hospital where people know her and like her than living in the midst of a large, unfamiliar environment with neighbours that could view her as a nuisance.




I support Unique http://www.rarechromo.co.uk/html/home.asp and I am a SWAN UK (Syndromes without a Name) 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

A #Specialsaturday Post - Uncertain Times & Embarrassing Moments

The meeting we had yesterday to plan Chrissy’s future care was chaotic & disheartening. There was a roll call of apologies for absence – people worked on different days, a ward ‘crisis,’ someone away on a training etc. One of Chrissy’s care managers was present but he has no influence as his authority are not paying for her care. No one from the commissioning authority (funding ‘without prejudice’) attended. The psychiatrist has been unable to get hold of anyone there, which means we can’t plan Chrissy’s future.

I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.

The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!

The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.

Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the Facebook page - http://www.facebook.com/SpecialSaturday
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'How I'd like my Life to be' by Chrissy - A #Specialsaturday Post

A chance call from the Challenging Behaviour Foundation & a chat with two parents of other adults with complex needs have forced me to think long and hard about the journey we’ve been on with Chrissy over the past few years.

After 27 years of fighting to get Chrissy what I think she needs I’ve become entrenched in trying to sort out failings in the systems designed to support her. Am I failing Chrissy myself because I’m too exhausted and overloaded with information to think clearly anymore? It got me thinking… Have I lost sight of how she would want to live her life?

If she could speak for herself this is what I think she’d say…

Chrissy:
‘I’d like to live in my own home with all my own things around me, including my computer, my DVD’s, my foot spa, multi-coloured hairbands, books and favourite pictures. A garden that I could go and sit in on sunny days would feel very calming. I could blow bubbles and play ball out there too. I’d have my own chair and table outside with a sun umbrella for hot days so I could draw or watch my portable DVD, or sit quietly listening to the birds and looking at flowers with my favourite drink or snack in front of me. It would be fantastic if the garden was big enough for me to ride around in my trike, or close to a safe space where I could ride it with supervision. It musn't be too overlooked because I need my dignity respected when I lose control of my emotions & strip off on the lawn!

My home must be close to my family’s. I stay with them overnight once a week and would love to see them even more often, either at their home or mine for shorter visits. No one else could evict me or take my home away from me - it would be mine for as long as I needed it & furnished with my needs in mind. I wouldn't be forced to move to any more unsuitable places where there's no bath, nothing to do, or a string of strangers to care for me who don't understand my needs.

A wall-chart with removable stick-on symbols to help with my daily routine and planned activities for each day so that I'd have plenty of interesting things to do when I’m feeling up to it would be nice. I'd also like daily home-based activities available as I can’t always get out and about.

A bath with a rail so I could climb in and out more easily is a must. Showers are a definite no-no; the spray on my skin feels horrible. My body reacts to the world around me differently to most people's. Sensations that you don't notice, like a breeze blowing in my face, or sand under my feet feel very uncomfortable but broken bones & missing toenails don't seem to bother me. So you need to keep an eye out for unexplained swellings or hidden injuries. I have problems with balance & spacial awareness, & take my time walking on uneven surfaces, around obstacles or up & down steps. I can’t regulate my own body temperature well but fans on hot days & wearing gloves indoors if my hands are cold help. If I ask to wear a coat, scarf and gloves on a hot summer’s day, indulge me - they won’t stay on for long.

Sometimes I appear to have understood what's said to me but, actually, I may not have done; I need lots of time to process information. I can be helped through difficult times by having pressure applied to the backs of my hands, a cuddle, sitting with my weighted blanket on my lap or a massage. If an outburst threatens, I sometimes respond to tried & tested distraction strategies or basic sign language and symbols to de-escalate my distress. You may find it helpful to try & identify a trigger so it could be avoided or minimised in future. If I lose control, I don’t like other vulnerable learning disabled adults around to witness it & react with their own disgust, fear or anger. I can’t cope with other people’s challenging behaviour around me either. My own problems are more than enough to deal with.

Consistently applied behaviour support approaches are vital for me to remain as stable as possible, along with verbal communication, appropriate symbols and sign language. Any staffing or routine changes must be carefully planned and should only take place if they benefit me, & for no other reason. I need help to dress nicely, take care of my clothes & other possessions, shave my legs, keep my hair untangled and my teeth clean. Like most women, I lap up compliments & love to look nice. I especially need help to ensure that my diet is healthy and that my weight is kept under control because the medicines I'm on make me ravenous & food-obsessed.

On good days, I’d like enough support to go out for a walk, maybe to the local shop, or a drive to a garden centre or park. On bad days, I need space to rest undisturbed in my room, or have a good scream. If I'm hurting myself, I need to be kept as safe as possible, with carefully positioned cushions or sharp edged furniture moved. I'd need a safe area in my home, to which I can be directed or carefully moved with planned physical interventions if necessary as a last resort.

If I say I feel sick or start looking vacant or smacking my lips, look out for an epileptic seizure, & help me sit down somewhere. Even short seizures sometimes wipe me out & leave me confused & disorientated, so I may need a sleep to recover.

The local GP and learning disability team must be fully briefed about my condition and able to respond in emergencies – an appointment several weeks ahead is no good as my condition is very changeable and unpredictable. They'd need to be open-minded about what works for me as I'm extremely sensitive to many medications & they can sometimes induce rare adverse side-effects.

My senses get overloaded by any clutter around me at the table when I’m eating or doing an activity. I’m compelled to have two of just about everything from tissues to dollops of tomato sauce but cutting one slice of toast in half or ripping a tissue in two is fine. If I ask 100 times what’s for dinner, try to be patient & distract me but be firm with me, & please don't overfeed me to sedate me. Oh, just one last piece of advice for now - if you don’t make my bed covers all square and neat around me and turn my pillow (I call it ‘cushion’) over when I ask, I may shout at you and throw a strop.

Yes, I know I'm a diva but I have to be to survive in your world.'

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page -http://www.facebook.com/SpecialSaturday Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog - http://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday