Wednesday, 19 June 2013

'The Difficulty of the Challenge ahead should not deter us from having High Aspirations.'

At nanny's up north
Last week you may remember I blogged about a bungalow that had come up on the social housing register in a neighbouring village. It looked very likely that Chrissy would be successful so her MDT team and I swung into action. Last Thursday 14 of us sat round a table to thrash out details of the support package Chrissy will need in the community. I felt immensely reassured when it was agreed that there would be a bed for Chrissy at the assessment & treatment unit should a crisis occur during the transition stage that meant she needed to return there. Also, it was agreed that if her condition were to become unstable again in future there would be no delays in admitting her for inpatient treatment & assessment again, as there were before.

We even discussed finer details about the need for flooring to be the same throughout to enable Chrissy to move around as independently as possible. She trips on threshold strips between rooms and finds changes in the appearance of different surfaces disorientating. As ideas about suitable robust furnishings etc were bounced around and the issue regarding platelet count and Chrissy's meds sensitivities were discussed her psychiatrist said to me 'you know her so well.' Ridiculously I felt tears well up. It has taken me nearly 30 years to get to this point - for an MDT to see what I see and to fully understand the complexity of her needs. Often the term 'complex needs' is bandied about without the true nature of those needs really being identified and addressed. Due to the fluctuating nature of Chrissy’s symptoms and behaviours, previous assessments have provided mere snapshots of the whole picture but now she has spent so much time as an inpatient, there is ample documentation to inform better treatment and a more holistic view of her needs for the future.

After the meeting I felt an overwhelming sense of relief that finally Chrissy will get what she needs to lead the happiest and fullest life possible.

Then, today I had some bad news - another more local applicant has got the bungalow in the neighbouring village. Local connection trumps priority banding, which could well rule out anywhere local unless it's on our doorstep. Each English housing authority must have an "allocation scheme" for determining priorities. We were told that, in this case, S106 Planning Obligation applies in that applicants must have strong local connections to local parishes. Unfortunately for us, the first priority is to applicants who live in the parish where the accommodation is rather than neighbouring parishes.

I was upset that we hadn’t been informed and I’d had to find out by chasing it up, and told the allocation officer so. She said they didn’t ‘have’ to tell applicants if they had been unsuccessful and spouted the S106 Planning Obligations at me. I kept telling her that I understood the rationale behind the local connection criteria but she chose to miss the point and kept repeating the S106 regulations. In the end I asked her if she was robot…... So frustrating! She knew the that there was multi-agency working involved, who needed to know the outcome of Chrissy’s bid as soon as possible so they could plan her support. Other members of last week's MDT were as gobsmacked as I was, We had all been on tenterhooks ready to act on the outcome of our bid. The allocation officer's approach was not in the interests of joint-working, and I'm told that someone will be raising the issue with her Housing Manager.

Despite the setback, our aim is to have Chrissy settled into supported living by October. She's eating better and we are awaiting results of blood tests but her moods are still very volatile and unpredictable. At the weekend we took her up north to see her nanny. The plan was to go out for a meal on Saturday night for an early Father’s Day celebration. As we’d enjoyed an uneventful pub lunch together last Thursday I was hopeful that it will all turn out fine. The journey to Chrissy's nanny's was OK but Chrissy kicked off after we got there then it all escalated on the Saturday. She had lovely moments, as Chrissy often does but her moods switched so suddenly our nerves were in shreds. She stripped off a couple of times – behaviours we hadn’t seen in a while - so we decided not to risk the meal out. I stayed home with Chrissy while Ian, Alex and Ian’s mum went out.

The next day, Chrissy kept getting ‘stuck’ with transitions. We thought we’d get stranded there but we did eventually get her into the car around tea-time, and the drive home was relatively peaceful.

Discussing the visit with her little sister; Alex, was thought-provoking. Alex said I was ‘deluded’ because I keep trying to take Chrissy out with us when it nearly always ends badly. I don’t think it nearly always ends badly but I can understand her perception that it does! I do try to assess the risks before I take her anywhere but she’s so unpredictable at times….. I tried to explain to Alex that if I stopped trying to take Chrissy out I would be giving up on her, and when it does work, we rejoice! This comment by Chrissy’s positive behavioural support team from 2009 sums up the approach that I believe in:

‘Clearly, Chrissy has a well-established history of being the person that she is, and experiencing the world as she has. The goal for her to become a more active and engaged person, whose daily routines are rich and varied, may not be easily achieved. Nonetheless, the difficulty of the challenge ahead should not deter us from having high aspirations.’

I support Unique & I'm a SWAN (syndromes without a name) blogger


  1. I'm so glad to have found your blog via SWAN UK and Renata. I have recommended you to Mencap for their blog list too.
    Downs Side Up

    1. Thank you Hayley. That's very kind of you. So pleased you found it interesting.