I’ve never felt more exhausted that I have the past few days. And there doesn’t seem to be any let up on the horizon either.

A big part of it all is this “Personalisation” bullshit. I’m getting a bit tired of people who like to wave the flag for personalisation, claiming that my deal with the council to secure Steven’s personal budget is a success story. It’s got buggar all to do with the principles of Personalisation. It’s about money and nothing else. The work involved in setting it all up has been phenomenal. Over the past seven days, I’ve spent ages writing contracts and job descriptions for the support workers. I’ve had steam coming off my calculator as I try and work out the different permutations of tax, national insurance and employer contributions. Yesterday, I spent 90 minutes on the phone to HMRC, just trying to clarify a simple point about the fact the workers will still be registered with the old agency, although their main employer will be me. The person couldn’t have been more unhelpful. And after 90 minutes, I still have to face the prospect of another call to their forms department because the main office don’t deal with the issue of P14s. And then theres the day to day stuff of being a manager to five staff. One of the support workers was sick last week and quite frankly, he wasn’t really well enough to come back yesterday, so I had to deal with that. I found myself putting my counselling hat for one of the others whose OCD is getting worse and could cause problems when he’s meant to caring for Steven. I’m not uncaring but looking after Steven, me, my clients at work, my friends and family I can do willingly and have the energy for that. But I don’t want to have to take on a whole new set of personal issues. And that phrase I wrote a few blogs ago keeps ringing in my head – “And just so Steven can go swimming”. Surely, it shouldn’t be this complicated; this time consuming; this incredibly involved.

I had a ruck with one of the cab drivers on Sunday. Steven was crying in pain in the car (more of that later) and I had to sit and listen to the driver complain about how much money he loses on other jobs by being given Steven’s rides. When we got to the pool, Steven was in so much pain he wouldn’t get out of the car, so I asked the driver to take us straight back home. That prompted another 15 minutes about the £27 he lost in having to do the return journey. I made a complaint to his boss and it looks like he’s had his knuckles smashed. Good.

The biggest cloud is Steven’s health. We’re now entering the fourth week of him being in real pain when he sits down. I’m becoming more and more convinced that he’s got kidney stones but it’s so hard getting the medical people to take it seriously. I keep thinking of that quote from Sara Ryan about the learning disabled being seen as “not quite human”. I’m not sure if it was you or I having this problem, we’d be treated so dismissively. Today we had our second trip to A&E in a week. The staff were great. We were fast tracked through straight into a cubicle. Steven was making a lot of noise when we arrived because he had been in agony sitting in the car. They did everything one might expect from them, except we’ve just come away with another prescription for antibiotics and told to book another with the GP at the end of the week to “review the treatment”. He’s bearing the pain very well actually but all he wants to do at home is lie on the sofa, because it is the most comfortable position. Sitting at the dining table to eat his tea is agony and he hasn’t used the computer for a fortnight because that is too painful as well. How long will it take before someone takes the bull by the horns? It took me back today to the time Steven was under a DoL and Hillingdon wouldn’t refer us to an IMCA. I knew we were entitled to one but you can’t contact the service yourself – you have to be refered. The same today – I can’t pick up the phone and call the urology department (I know because I tried) – I need a GP referral.

So, personalisation, health, suddenly becoming a manager, and a desperate lack of sleep sums up my last week. And no sign of a light at the end of the tunnel.


4 thoughts on “Spent”

  1. You have my sympathy – especially over Steven being in pain and needing treatment – particularly hard to deal with. As for becoming an employer, setting it up according to the Council’s instructions had me gibbering at first – and I chickened out completely of dealing with tax and insurance directly. It did settle down quite quickly, and when things run smoothly isn’t so bad, but I am sometimes astonished at how much time caring for the carers can take. The plus is that after three years, my daughter is more confident and settled – quite liking the idea that she is the employer. (technically).

  2. Oh yes- getting the health service to treat people with learning disabilities in the same way as the non- disabled will be revolutionary. It’s all ok on paper, but when it comes to the extra attention , effort and thought it takes to realise that equality, we’re on a slippery slope toward the door…..

  3. Really hope Steven starts to feel more comfortable soon. Ghastly and exhausting time for you both with no let up. Sympathies and a virtual hug!

  4. Since Steven’s in that much pain, perhaps waiting until the end of the week for GP follow-up/fast-track referral is not worth it? When you request the referral, you could always give them choices – “I feel strongly that Steven needs an emergency referral to the urologist because of x,y,z information that came out of the A&E visit… Well, yes, I could get him to you at , but as he is really only able to cope just now in his home environment, if I do send him down, you will need to accept that you will have a well-built young man with autism very possibly having a massive pain-related meltdown in your waiting room. So unless that’s something that you consider your staff and your other patients are fully prepared for, you may prefer to make a home visit or simply write the referral now?” File it under the heading of ‘reasonable adjustments’!

    Re the stress, hope you will soon be able to take supervision that will help you reaffirm your boundaries and consolidate your safe operating space.

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