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Sudden Endings

September 15, 2012

I’ve been reflecting on the events of the last four days and trying to work out what the hell was it all about. In less than 48 hours, I swung from terrible despair and fear to triumphant relief and for what? If anyone from the social care field is reading this post, I would genuinely be interested in your theories of how things can change so dramatically, and so suddenly.

A thought struck me this afternoon – this isn’t the first time this happened. Not by a long chalk. So much so, that one might almost term it a pattern in my dealings with Hillingdon council. We’ll be plodding along and then all of sudden, whoomph, something important to Steven’s support system is withdrawn with immediate effect.

Here are five occasions in the past two years:

1. March 2010. Steven had been at the positive behaviour unit for three months. Late one Friday afternoon I received a call from Steven’s social worker, informing me that they had implemented a change that would have an immediate impact. They were withdrawing Steven’s direct payment package. The next payment was due to go into the account the following Monday morning and I was given 1 working day’s notice that it has stopped. The consequences could have been dire. At the time, our direct payment worker who had worked with Steven for 5 years was working about 30 hours per week. He was a vital cog in Steven’s life, especially stabilising as a familiar face whilst Steven was struggling to cope with all the changes brought about by the move to the positive behaviour unit. If Hillingdon had got their way, the direct payment worker would have had to be immediately laid off and Steven would have been stuck for his activities on the MOnday morning. As it happened, I had a bit of spare money in the direct payment account to continue paying him for a further two weeks. I also, used the money I had put aside to pay the DP tax bill to cover his wages for another two weeks after that. Because he is a loyal man with great integrity, he then did a further two weeks voluntarily. One day, about four weeks after the social worker phoned me, she arrived at my flat unexpectedly just as I was paying his wages. “What’s HE doing here?” she said. When I explained, I could see that she was cross and confused that it was inconceivable to her that someone might continue to work unpaid out of loyalty and a strong work ethic. It took six weeks to resolve the issue but eventually the direct payments were reinstated and backdated to the day they had suddenly stopped. No explanation. No Apology.

2. April 2010. I’ve written about this many times but the day after Steven made his first escape from the positive behaviour unit, all his daily activities were cancelled with immediate effect, pending risk assessments on all the venues. He was really distressed by this and obviously, couldn’t understand why he was being punished in this way. I don’t blame him; I didn’t understand it either. It took three and a half months for his community programme to be reinstated. They could only carry out one risk assessment a fortnight but ultimately, when the programme was back in place nothing had changed – he was doing exactly the same things at the same places as he had 14 weeks previously.

3. March 2011 and a week before Steven’s 21st birthday. Yet again it was a Friday and I was called urgently to a meeting with the social worker to be told they were cancelling the contract withe agency that provides the bulk of Steven’s support immediately. It was all very vague with mutterings about “employment irregularities” and “possible immigration issues”. This hadn’t arisen from a council investigation but from an anonymous tip-off! I contacted Steven’s barrister (we were mid trials don’t forget at this time) who was an immigration expert and she arranged to see all the workers and the managers at her chambers on the Monday morning. Needless to say, all the papers were in order but it was three weeks before the council reinstated the contract. No explanation. No apology. I had to take three weeks off work as I only had our direct payment worker to cover. The guys were great though and made sure that Steven’s birthday plans weren’t ruined by working for as much I could get together to pay them out of my pocket. And three weeks after the contract was abruptly cancelled, everything was back in place exactly as it had been before.

4. February 2012 and the saga of the respite package. Hillingdon had spent over a year on different programmes trying to get Steven to return to the centre he used to go to for respite and the same place that he was whipped away from after one night and taken to the positive behaviour unit. These programmes included: desensitising therapy games;  subliminal messaging; social story books. None of them worked because he was dead against going back there. For ten months I did without any respite at all and then they agreed to fund a support worker staying overnight at our flat once a fortnight. This worked a treat but then all of a sudden I was notified, guess when, on a Friday, that the respite was being stopped straightaway. I had arranged a night out with a friend for the Saturday which I had to cancel. Three weeks later and after some intervention from my solicitor the respite was back. For over a year I had been proposing a very cheap respite option and each time it was rejected. Now, all of a sudden it was agreed and respite was back on. No explanation. No Apology. Some of you may remember that this story had a sting in the tail. The week I was due the first direct payment to cover the respite, Hillingdon suddenly deducted a backdated charge for Steven’s care from the payment leaving me with 16p to fund the respite. Again it took another solicitor’s letter and they admitted the charge was in error and refunded what they had deducted in error.

5. September 2012 and the sudden cancellation of our Housing benefit only for it to be reinstated 48 hours later, during a radio phone in programme!

I’m often challenged by council officers about trust issues. There are several of them that I totally trust and there are lots that I wouldn’t trust as far as I could throw them (as Middlesex county boy’s discus silver medalist 1976, I could probably throw the shorter ones quite a distance). What I find almost impossible to trust is that this kind of thing won’t happen again. It’s happened five times now and the consequences have been awful. I don’t want to suggest that the intention was to destabilise but that was the outcome of each of these sudden withdrawals. Thankfully, I know Steven well and have excellent support workers, so any destabilising was kept to a minimum.

What I’d like to know is, is this pretty common practice across the country or have I just been unlucky?


From → Social Care

  1. Marvellous blog post from Lucy Series @thesmallplaces, responding to the question I posed in this post:

  2. Yasmin permalink

    My son Jason is 30 years old is spinally injured c5/c6 Tetraplegic with mental health issues due to never coming to terms with his disability. who has Capacity.

    In September 2010 Jason and I asked Camden my local borough to help Jason as he had a relapse. They sent him to a care home for old people with dementia far away from London I went to see him regularly each journey taking ;me 4 hours to go and 4 hours to return.

    As weeks turned into months no psychiatrist working with him medication increased and himself changing I started to have concerns, So I drove down one evening unexpected at tea time to see how my son was. I found my son slumped in a chair covered in blood stinking of urine finger gangerene tongue protruding from his mouth no idea of his surroundings Wheelchair 3 metres away from him.

    I was horrified shocked and could not believe what they where doing to him. I asked him if he wanted to come home with me he told me yes I put him in the car the car was surrounded by staff and I was not permitted to drive away. After 5mins the police came and asked me where was I taking him I told them that my son needs a hospital he is in a bad way. The ambulance arrived I pointed out my sons appearance and his gangrene finger the ambulance man asked why had he not been taken to hospital sooner.? Then DOLS was announced they took him to hospital I was not allowed to go with him I was not allowed to see him.

    What is DOLS I wandered. I went home confused. Later that night they took my son back to his perpetrators the very place I had concerns about with his neglect and abuse.

    That night 19 months agoI went home and googled. What is DOLS ? I searched to no avail no information.

    Out went Dignity and Respect in came Best Interest and Capacity these very words I started to hear and have been hearing for 2 years now.

    My son went in a physically healthy young man. His disability never an issue.He lived in the community with his 24 hour care package with the same carers for 8 years. Jason and I believed this would be for a few months.

    Camden have been incompetent. I have told them so. They have constantly tried to push me away this story is only 5 months of this experience.

    You talk of trust we all want to trust and believe in human kind but right now I don’t trust anybody.

    Camden in May 2012 sought Court of Protection for his property and affairs illegally. I have challenged the validity with the OPG to no avail.

    As deputy’s for my sons H/A property they have gone in and used a pneumatic drill to undo the wet floor bathroom that I had tiled ready for him to go home which should have been in July 2012.

    I have the evidence, but it counts for nothing how can Adult Social Care get away with intimidating bullying and scaremongering? The Service user and there families.

    My son wants to go home 3 imca Advocates who have deemed my son to have capacity to go home with his care package. My son has the fundamental right to freedom to live and access the community.

    Camden want to terminate my sons Tenancy hang on he was going home in July where did you spring this one up from.

    Today my son is stable he is at the point of where he was 2 years ago. I am surprised he is alive with all the medication he has had in all this time.

    Jason is desperate to go home home to live his life. He is being kept in a Brain injury unit in Brighton for people with challenging behaviour. It is hard for him as he does not relate to this.

    After 2 years his mental health needs have never been met. He has lost 2 finger tips and is waiting for an operation to debridge his wounds on his hips.

    We have just been on a whirlwind of deceit and lies. When all we asked for was Could his mental Health issues be assessed and some respite.

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