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 The neurologist has attributed the changes in Chrissy to Zonisamide, so it's being withdrawn but we're likely to see clusters of seizures.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 Zonisamide is slowly being withdrawn.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

Frontline Care and Funding Wars

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

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

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

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

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

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

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

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

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

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

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

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


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

Legal Challenges and our Hopes for a Better Future

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

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

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

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

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

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

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

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

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



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

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

How Chrissy became my Launchpad into Journalism

I'm not a great one for New Year's resolutions as I've never managed to stick to any but this time of year often brings us fresh perspectives. As you can see from this blog, I've been caught up with my struggles to get Chrissy better and to get her the care she needs - so much so that, recently, I've let other things in my life slip, like my journalism career.

I've had over 1000 articles published in Glamour, Woman, Woman's Own, Best, Reveal, Take A Break, Pick Me Up, Sun, Mirror and Daily Mail, among others, but in my mid-thirties when I started working as a freelance journalist I was untrained and inexperienced.

I had always enjoyed writing for pleasure but never dreamed I could write and get paid for it. In fact, like many mums of young children, I struggled to get paid for any kind of work! It's even tougher when your child has significant difficulties, as it's hard to get childcare, there are more medical emergencies and hospital appointments, and of course the dreaded school holidays! I took on various jobs from party-plan to medical secretarial work but never earned enough to make a significant contribution to the household budget.

Back then of course, there was no internet and I was always on the lookout for stories in newspapers and magazines about children with disabilities but everything I found was about better known disabilities such as Down's Syndrome or autism. I never read anything about a child like Chrissy, who then, didn't have a diagnosis - not even autism. Her Geneticist at Great Ormond Street Hospital told me that Chrissy wasn't unusual - they were unable to pinpoint a cause for problems in 30-40% of their patients. 'There has to be an article here,' I thought.

I bought a book called 'The Writers & Artists Yearbook,' to get contact details for all the magazine publishers, and sent around a synopsis about what it was like not to have a diagnosis or medical label for my child. I didn't even have a fax initially - I posted it out to commissioning editors on all the leading women's magazines.

Two magazines came back - Woman's Realm, which folded in 2001, and Woman's Weekly. I went with Woman's Weekly because they were the first to offer me a commission. I was honest with them about my inexperience and they kindly gave me a detailed brief to follow about how they wanted the piece written.

My first ever published story (Apologies for the poor copy. It's the only one I have!)

Disability Now also published our story. It's a shame that they will no longer consider pieces written by anyone other than the person who has the disability. It means that people like Chrissy, are given no voice in their publication.

The two magazines had a similar readership so Woman's Realm couldn't run it too but they asked if I had any similar stories. I did! I knew lots of women with great stories - some of them mums, some single - all happy to make a bit of extra money and see their story in print. My friend's story about being at loggerheads with her husband over whether to take their disabled son on a family holiday was my next published piece. I was also invited to an 'Ideas Meeting' at Woman's Realm. What an honour! I guarantee it wouldn't happen today - much more difficult to break into the industry. The commissioning ed took me under her wing as she was keen to plunder my contacts. In return she helped me to hone my feature-writing skills without stealing my stories or my bylines! I asked her if she could recommend any correspondence courses and she told me about one that she'd heard good reviews about - unfortunately no longer operating. While I was learning how to build a freelance journalism business, I was still getting articles published and getting paid for them.

I branched out into training, and wrote and delivered trainings on managing challenging behaviour using communication strategies. I also trained and advised aspiring young journalists at an FE college and worked as an external verifier for journalism courses at colleges and universities. Meanwhile, I did a stint teaching adults with learning disabilities at an FE college while gaining a Further Adult Education Teaching Certificate.

My career success gave me the boost I needed to approach publishers about my book idea. My self-help book 'Bringing Up a Challenging Child at Home: When Love is Not Enough' http://www.jkp.com/catalogue/book/9781853028748 was published by Jessica Kingsley, London in 2000. Ten years later I wrote a chapter for a book published by the New England Journal of Medicine, entitled the ‘Genetics of Mental Retardation,’(Karger).

Chrissy's story continues with this blog. Did I really start it over two years ago?! It seems like only yesterday when I was grappling with HTML and the like!

Through this blog I've been offered some great stories but I also want to let you know that, although my own story is about raising a child with a learning disability, I would love to hear from you about stories on any subject!

To give you an idea, here are some topics I've written about and am looking for stories on:

Seasonal stories - currently those with a Mother's Day or spring/easter hook
Health stories - an unusual take on a common illness works well.
Funny, quirky, heartwarming & shocking real-life stories.
Age gap relationships.
Crime.
Weight loss due to shocking photo.
Cheating saved my relationship.
Botched cosmetic surgery.
Strong fertility story.
Someone who found out partner was leading a double life.
Woman whose wedding went wrong, was engaged many times, or suffered any sort of betrayal.
Mum whose child has problems with alcohol or is very overweight.
Strong relationship or true-life stories that you can imagine reading in a magazine.

Alternatively visit my Facebook page https://www.facebook.com/Sharingstories to connect with me, see examples of my stories and get more info.

Look forward to hearing from you soon!


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

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

My Life with Autism: The Supermarket - by Debbie Pollard

Debbie, mum of Matthew, aged 10, kindly agreed to guest post for me this week.


Matthew

When those of us who have autism in our families venture outside it can feel like walking through a minefield. We are only too aware of the danger. We just don't know exactly what will cause the explosion. One wrong step: BOOM!

The constant scrutiny is incidental.

Some of us feel like we are on exhibition every time we leave the house. Always on the brink of becoming some sort of grim public entertainment. There's always someone further down the food chain to feel superior to. Who needs Jeremy Kyle?

Matthew and I head for the front. Today we will enter the hostile territory of the supermarket. A logistical failure has left us without vital supplies. We are lucky enough to get a space in the relative safety of a disabled bay – our journey into the shop should present minimal risk.

Already we are attracting some interest. Well, I have parked in a disabled space and both of us can clearly walk.

Tut-tut. Blue badge nothing. She's no right parking there.

Eyes down. Focus on Matthew. I'm not ready for a staring match and I'm saving my energy for when I most need it.

In we go. I grab a basket as we pass. I don't need a trolley. We won't be buying much and, besides, I can't push a trolley and keep hold of Matthew at the same time. I know he will run, scream or lie down. But when? Where? Why? Well, I'll know when it happens.

We're in. Basket in my left hand, Matthews hand in my right. He's jumping up and down, making noises. His hood is up, providing a little sensory protection.

Why's she letting him do that?

“TOILET”.

It's the three minute warning. Matthew may need the toilet. It may just be a tactic to get away from this environment he has found himself in. This environment that I have brought him into. Either way, the toilet is the next place we are headed.

The disabled toilet is occupied.

“TOILET! TOILET!! TOILET!!!”

Heads whip round.

What a racket. Why doesn't she shush him?

Can a head really turn that fast without doing it's owner an injury? If rubbernecking ever becomes an Olympic sport, Team GB is a shoe-in for gold. Matthew is becoming increasingly agitated. How did it get so hot in here? Sweat trickles down the back of my neck. Ladies it is. We're going in, and it might not be pretty.

Horrible blueish lights in here. To stop people injecting drugs by making their veins hard to see? Energy saving? Just because someone liked them? It doesn't really matter.

Now Matthew's hands are clamped to his ears.

What's that laddie doing? He's too big: should be in the gents.

“DRYER”

“No, it's OK, no-one is using the dryer, on we go”

“DRYER”

“No, it's OK......”

Hand dryers are scary. An assault on the senses. The air pressure changes. Any bits of fluff or paper on the floor are flung around by the turbulence. Lets just hope we can get through this without one going off.

We're in, we are out. Hands washed.

“No, it's OK, Matthew, I'm not going to use the dryer”

He takes no chances though. He's been here before. Experience makes him cautious. Hands over ears, one arm linked through mine, we make our way back into the shop. I'm bent over sideways. Do we look strange? I'm sure we do. I know I'm being watched but I've got work to do.

“Good boy, Matthew, it's OK, we're back in the shop, dryer is gone”

Eh? Why doesn't she just make him walk properly?

Shelves and shelves of things to eat and play with. Trolleys and people coming from every direction. Giant freezers hum. A hundred beeps per minute from the scanners, all slightly out of sync. Chatter. Children crying. Dishes clattering and the faintly unpleasant odour of everything with chips being prepared in the café.

We head deep into the shop. It was cold near the freezers but now it's so hot. Milk. Far from the doors. Deeper and deeper. Avoid the sweetie aisle for now. To throw us, the supermarket changes it's layout now and then. I'm sharp enough to take avoiding action when necessary. Almost there. We're here. Basket on the floor. Matthew by the hand. One, two cartons into the basket. Matthew has held up well so far. Time for him to choose a treat.

I relax a little. Rookie error. Matthew slips his hand from mine and he's off. He has carried out his own visual sweep of his surroundings and spotted something I've missed. He's on it like heat-seeking missile. Packets of sweets at the end of an aisle. Of course. A well known tactic of the supermarket. How could I have forgotten? I thought we were relatively safe.

Some people just can't control their children.

Snap decision. Drop the basket and run? Just run? I choose the latter – damage limitation is all I can do now and keeping hold of the goods will make our escape a little quicker. He's at the sweets. Two packets ripped from their hooks.

Check her running in those boots

Trainers! Kit error. Still, I've caught up with Matthew. To be more accurate he has ripped open a packet of sweets and has stopped to eat them. That packet will be written off. I'll take the empty wrapper to be scanned. There's a chance for the other packet though.

“Matthew, give Mum the sweets”

“Sorry” (a word Matthew uses when anxious or unwilling to co-operate)
I only fight battles that I might win. We could carry on this wee stand off all morning. Or at least until the sweets are all gone. It could escalate until Matthew is lying on the floor screaming and I am on the verge of tears. Nothing can be achieved here.

I don't believe it – she's just letting him keep the sweets. No wonder he's so badly behaved!

Plan A was for Matthew to chose a treat. Well he has chosen it. Plan B. Quickly to the nearest or quietest check out. Avoid the ones with eye-level sweets to tempt Matthew. Damn ingenious supermarket. But at least in this one there are actually some check-outs that are sweet-free. Others are more ruthless and we're not ready to tackle those yet.

Empty check-out. I'm so, so glad. I can see the exit. Milk on the conveyor, Matthew's hand still in mine. He'll not try to give me he slip again – he knows I'm back on full alert. And, anyway, he is contentedly munching his sweets.

“Are you enjoying them sweets? Not talking son?”

Ignorant. And look at her. A smile would crack her face.

“Enjoy the rest of your day!”

“Thank you. You too.”

Got the milk. Got Matthew by the hand. The doors are getting closer. Fresh air, I can almost smell it. Out in the open. Daylight. I can see the car. Safely inside. Engine on. And breathe!

Until next time.


Debbie & Matthew

Debbie wrote this post for Act Now For Autism, formerly known as ACT NOW (Autism Campaigners Together). Act Now For Autism http://autismcampaigners.blogspot.co.uk/ is a core group of people passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. Act Now For Autism are campaigning against aspects of Welfare Reform, specifically face-to-face assessments and the Work Programme. They are ardently campaigning for advocacy to be offered to anyone who has to attend a benefit assessment.


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