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

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

Small Steps - A #Special Saturday Post

Over the past few weeks Chrissy's affairs have taken precedence over everything else - but it's been worthwhile.

I had a positive meeting with her new psychiatrist & was very impressed that he'd taken the time to read this blog! He referred to incidents I'd written about & it was clear he'd researched her chromosome disorder. He was open-minded and interested in exploring causes of the more intense clusters of self-injurious behaviours for which no environmental trigger has been identified. As Chrissy had settled down after a difficult month, he decided to withdraw the last 15mg of her Topiramate while introducing Pregabalin. I don't know if that's why we had such a challenging time with her. Her last spell of horrendous behaviour coincided with Topiramate withdrawal & it was similarly intense here yesterday. Her diva-ish behaviour has been off the scale - she's been moaning, obsessive, demanding & irritable. We did have a lovely cuddle with her on the settee while we watched Come Dine With Me but had to hold both her hands the whole time, effectively handcuffing us to her. A great way of getting our individed attention! She then kicked off again later & wouldn't go to bed until after midnight.

I'm worried about how Chrissy will cope at Xmas, particularly as last year was so awful. She will obviously be here with us on Xmas Day, as she's always been, but when more of the family visit on the 28th it could be apocalyptic. Her stripping is particularly difficult to manage when there are young men & children around, as you can imagine!

Anyway, on a different note, another positive outcome came from the 1st stage of our appeal process re the long-standing funding dispute between the local authority & NHS trust. The dispute has caused a number of problems that I can't elaborate on publicly at the moment but our biggest recent concern was that no one was taking care management responsibility. We need to plan for Chrissy's discharge from hospital & the type of 'bespoke service' she needs may, according to estimates from the Challenging Behaviour Foundation, take about 12-18 months to organise. So, although she needs to stay in hospital until meds changes are completed, we need to start planning now.

At our appeal meeting the NHS trust admitted to 'horrendous' errors in the healthcare assessment process, & offered to start from scratch with a retrospective assessment. This means combing through Chrissy's records from the past three years. I was advised that to see those records, I'd have to apply to the Court of Protection for Deputyship, which puts my responsibilities for Chrissy on a more legal footing. I filled in all the forms, so I could make decisions re property as well as health & welfare, as she may end up with a home of her own. The forms are tedious & repetitive, & took me nearly a day to complete but they're done now. I'm sure it will be worth it in the long run!



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