Friday, 7 October 2011

A System that Lets us all Down

Chrissy smiling sweetly after an outburst - loving the feel of my chilli-chopping gloves!

Sorry, this is a long one. I've got quite a story to share...

Last week I called the ward to see how Chrissy was and heard she’d become very challenging, and her sleeping pattern had changed radically for no obvious reason. We were on holiday in Sardinia and I immediately felt guilty, wondering if she was missing us. We’re not sure about Chrissy’s concept of time – but we suspect she pines when she goes longer than a week or so without visiting home.

Last Sunday after our return home, I phoned again to see how she was and was told that she’d spent all day screaming and self-harming. She couldn’t be pacified and there were no obvious triggers. I was due to see her neurologist on the Tuesday and arranged to bring her home afterwards.

After the appointment, I chatted to Chrissy’s nurse about her. She said Chrissy’s behaviour had been really difficult over recent weeks & she hadn’t been able to pinpoint why. We’re hoping her multi-disciplinary team will be able to identify from behaviour monitoring charts what triggered these changes. Chrissy hadn’t been home for a while, which is unusual for her, there had been lots of different staff on the ward. There were also drug changes – the anti-epileptic, Topiramate, has been reduced and thyroid medication introduced. The neurologist explained that behaviour can often worsen after an anti-epileptic is reduced or changed as it can have a sedating effect that wears off when withdrawn. Apparently, the thyroid drug is low dose and would not be expected to cause these side-effects. I’m pleased that the neurologist and psychiatrist are working closely together on meds changes but, despite her being in hospital for 20 months, we still have a long way to go with further changes indicated.

I wondered about the support and autism training ward staff were given, and, importantly, their experience of dealing with patients with autism. I asked about daily activities and the nurse said she tried to do baking with Chrissy but could only do it when regular staff were on shift. Where was the consistency and continuity of care? She said that there had been lots of staff changes and during further discussion, I grew concerned that bank staff weren’t properly (if at all) briefed about the patients. When the nurse is on shift and working with new staff, she advises them on the day about how to bath Chrissy etc., which is nowhere near long enough – anyone that works with someone as complex as Chrissy needs to shadow for a period of time surely? For example, when Chrissy kicks off, if you try to intervene or respond to her, which most people would do naturally, it can make things escalate. We had been told before Chrissy’s admission that all bank staff would be known to her and taken from a regular hospital pool rather than outside agencies. This doesn’t appear to be happening.

When we got back to the ward, it was chaotic. Chrissy was wearing someone else’s pyjamas or clothes – wasn’t sure which – the top had a huge rip across the chest, which I was told she had done herself – very likely – but to leave her in it when they knew I was coming? There were other unfamiliar items of clothing strewn around her room. She was in bed and her carers had got her up when I arrived, instead of getting her ready for her visit home as you’d expect. This could be part and parcel of Chrissy’s poor sleeping pattern and challenging behaviour though I would think she’d have been more compliant due to her excitement at coming home. A carer dressed her in a horrible pair of joggers that had shrunk and faded in the wash. Her carer was lovely and friendly but I tensed when she excused the trousers with ‘She’s only going in the car, isn’t she?’ Chrissy was getting low on some of her clothes because I do her washing & there was a huge bag of laundry waiting for me but there were a nice pair of trousers in her wardrobe. I swapped the trousers, asking the carer to throw the offending ones away. Some clothes were crumpled up in her wardrobe with no attempt to fold them neatly and other people’s clothes were strewn around the room. I never spend much time on the ward – it isn’t encouraged because new faces are disruptive. I was dismayed by what I saw. Sorry, but I strongly believe that we should, as far as possible, treat other people, including those with learning disabilities, the way we like to be treated ourselves. The fact that these carers and nurses were obviously lovely, compassionate people made it worse in a way. Casual, throwaway remarks can reveal volumes about a person’s attitude to disability – or is the hospital’s culture to blame? Do they see people like Chrissy as less than human, and become desensitised? After all, they deal with the most challenging disabled adults out there. Am I expecting too much? Anyway, besides all that, it’s meant to be an autism speciality service with tight structures and routines.

The medication hadn’t been prepared before I’d got there so Chrissy and I had to hang around while it was sorted out – which was agitating her. The Diva waits for no one! Then her symbols book (for communication) couldn't be found. The nurse in charge said ‘it doesn’t matter does it now her communication’s so much better?’ [since the Topiramate reduction] I doubted the psychologist or speech therapist would agree with that view, The symbols are meant to be a consistent part of her care plan and used to move her on between activities and to help her focus, among other things. After some frantic searching, we had to leave without the book. I felt a sense that they were ‘fire-fighting’ on the ward, just dealing with issues as they arose. Other things have been lost on the ward too, which is hard to understand when there are so few places to lose anything!

I fought back tears all the way home and wondered if there was any way that I could keep Chrissy (literally, not take her back) but her extreme behaviour at home soon made me realise how futile that plan would be. Chrissy's volatility and irritability got worse as the evening went on. She alternated between screaming, ferocious self-harming, violent outbursts and loveliness. As always, it’s heart-breaking to watch because she can’t tell us why she’s doing it or how she feels. I noticed hand tremors and bald patches where she is pulling her hair out. The following morning, Chrissy was generally calmer, although she kicked off for a short time after banging her knee on the bath as she tried to climb in. It was interesting to see how she reacted – she smacked the spot that she’d hurt, then banged a nearby mirror several times with her hand, then tried to spit (luckily a skill she hasn’t mastered very well), hit me, pull her hair and throw something all at the same time. Pain has a different effect when it’s not self-inflicted – and it was threatening to drive her into a frenzy of compulsive destructiveness and self-harm – she would have hit me if I hadn’t dodged out of the way, I let her calm down before encouraging her to climb into the bath again. There is nothing else you can do when she gets like that. Offering to kiss it better fuels her rage.

It would be too simplistic to blame all her behaviour changes on the care she’s getting. We suspect the quality of care has been worsening for a while and we have seen behaviours like this through drug changes (and during other times where triggers weren’t obvious) since Chrissy was a baby and still living at home. So, we are, for clarity, looking at them as two separate issues – the third (major) one being the backdrop of the funding dispute holding up future planning and preventing a cohesive, transparent approach to dealing with any problems Chrissy faces.

This dispute now involves three counties again – it had shrunk to two, or so I’d believed. They are all counties that Chrissy has lived in since adulthood. It does seem like poetic justice as the third county had done all they could to avoid being ‘dumped on’ and now it’s come back to haunt them as one of the NHS trusts is ‘seeking to transfer commissioning responsibility.’ I’ve been advised not to get involved in all the ‘politics’ but it’s more than that. Chrissy has been turned down for continuing healthcare funding because her needs, according to the way her assessors have used (some would allege ‘abused’) the assessment criteria, are deemed to be more social than medical. All those I’ve consulted in social and healthcare related industries are flabbergasted by this decision. One of the authorities is appealing against an ‘extra component’ allegedly used in the assessment, the nature of which I can’t go into at this stage. It has huge implications for Chrissy’s future care and may open up a can of worms for other people turned down for CHC by this NHS trust. We now wonder how much of Chrissy’s medical support over the past eight years was driven or at least influenced by this ‘extra component.’

In addition, because no one wants to take financial responsibility we have not been able to plan for where Chrissy goes next, which leaves her in limbo.

As I write, things are escalating behind the scenes. By coincidence, someone commissioned by a local authority involved in Chrissy’s care visited her as part of a review of all out of county health-funded placements (due to the Panorama programme apparently). Her report recommends radical changes to Chrissy’s care and a speedy resolution to the funding dispute. An independent advocate is helping me work towards the same end. I’ve made a complaint to the hospital and against the local authority and two NHS trusts involved in the dispute. I’m appealing against the continuing healthcare decision, and asking it to be back-dated and re-assessed.

This isn’t just about Chrissy anymore. Our story is an exposé of a flawed system that lets down society's most vulnerable.


  1. Oh Gosh Jane, I am so upset to read this. Poor Chrissy. How awful for you all. Well done for having the strength and determination to keep fighting, though of course giving up isn't really an option when it's your child, even if the fight in you is rapidly decreasing. I hope this all gets resolved as soon as possible for Chrissy's sake and yours. It must be so draining and soul destroying. It is disgusting that you should need to fight for her care! Xx

  2. Thanks LittleMamma, It can become all-consuming.. Wonder what the stress does long-term but like you say giving up isn't an option. I felt tearful, defeated & muddle-headed on Monday but have come back fighting. Writing it all down & feeling solidarity with other mums like you helps so much xx

  3. I am so sorry to read you are having to go through this on top of everything else, Keep Fighting! sending loads of love and strength your way Xxx

  4. Thanks for your words of encouragement Posh Totty xxx

  5. It's absolutely appalling.
    Thank goodness you still have the fire in you to take on this beaurocratic nightmare. Many parents, beaten down over the years by the sytem, would have given up and walked away,worn out fighting and weighed down with guilt.
    It's difficult enough dealing with the heartache when your son or daughter leaves home. The thing that spurrs you on is they're going to somewhere you've probably had to fight for, somewhere they will receive the specialised care, acceptance and understanding they are entitled to. You think the fighting is over but it never is.
    Chrissy is one of the lucky ones because she has a mother that cares passionately about the quality of her life. I'm sorry things are so difficult for you but rest assured you're paving the way for those that have nobody to fight for them.
    Thank you for sharing this. How else would we know what goes on?

  6. Like you, Michelle, I was compelled to share our story. I bashed Bringing Up a Challenging Child out in under 6 months. Back then, my anger about how Chrissy had been treated was corrosive & writing my book was the catharsis I needed. Now, blogging is another outlet & a great way of spreading the word. I shudder to think about what happens to learning disabled people in the system that have no one to fight for them. It's so heartening to know that there are people like you, once a professional carer, who go the extra mile - & way beyond - too. I was discussing your book, Marie's Voice, with my husband last night. To actually take someone else’s learning disabled child home from an institution & give them a family life is beyond awe-inspiring. Much easier to donate a fiver to Mencap & forget about them.