So that’s OT then

I can’t decide if I’m cross or just a little disappointed. I suspect I just had rather high expectations of what an NHS Occupational Therapist could actually offer us. Particularly in Surrey, where it seems that unless you are ‘known to Social Services’ (their language, not mine) then you receive nothing in the form of any specialist equipment at all.

Never mind that I can’t safely hold my son up in the bath. Never mind that he doesn’t have a single safe place to sit and play without help from an adult. Never mind that he’s outgrown his baby car seat and doesn’t have the strength to sit safely in a toddler seat. No, Orange’s needs don’t get put first. Surrey County Council has decided that since we are not ‘known to Social Services’ (i.e. a ‘problem’ family or one that is in need of support in many ways but namely financial), we don’t get any help at all with equipment. Our NHS OT cannot give us a thing.
No matter, you might think, we have savings, we have family who can help. We are lucky for sure. But specialist equipment costs thousands. For items that he will soon outgrow we simply cannot spend £700 on a car seat, £2,000 on a special chair, even more on a supportive buggy… Nor can we easily source these items since they are not always readily available direct to the man on the street. There is an unimaginably vast range of specialist equipment being manufactured, to help children just like Orange, and their parents, to live life a little more comfortably, a little more safely, but the doors have been firmly shut in our faces. ‘Buy it yourself, or struggle on, we’re not interested in helping you‘ is the message I’m receiving loud and clear from Surrey County Council.
While I could start on a tirade about how this attitude is just typical of this particular part of the country, populated largely by the status-oriented, the ladder-climbing, the ‘I’m alright Jack’ brigade, I feel my energy is better expended elsewhere. Not only did today’s OT visit prove wildly disappointing with regards to providing equipment, we also came away with very little to add to the daily therapies we already do with Orange, and no prospect of another visit. No, if I want more OT help, I have to go to the “FACTS” group that I’m not allowed to go to because I have The Beep with me on that particular day. If we are lucky, we will get a report from the OT who visited today and perhaps some more ideas down on paper of things to do with Orange to help his development. We’ll stick it on the wall, follow it to the letter, and hope, I guess.
So I have spent the last thirty minutes online, trying to find out for myself what exactly paediatric occupational therapists should be doing. And I have found what looks to be something wonderful. A clinic called Hemispheres that offers something they call ‘Movement for Learning’ therapy that, it claims, helps the natural process of neurological maturation to support physical, sensory and learning development. Their approach sounds like just what Orange needs and something we can all really learn from. A programme that is a little more bespoke, and quite a bit more intelligent, than the ‘put cubes in a cup’ games that were all the NHS OT really had to offer. NHS 0. Mummy 1.
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7 Comments

  1. Jane Gregory June 25, 2012 / 1:54 pm

    Very disappointing Mavis. Makes me so angry to see a new generation of special needs kids getting treated this way when they should be a priority. Have you thought about going to the local newspaper about this? I've found over the years that it works wonders!

  2. Mavis Cruet June 25, 2012 / 2:11 pm

    It has crossed my mind, being a PR consultant and all… I may well do just that. We're leaving Surrey soon, and hoping it will be different in Cornwall, but for all the other families here with children who have additional needs, it seems worth the call to a contact or two. Shame it often takes such tactics to inspire action.

  3. areyoukiddingney June 25, 2012 / 4:59 pm

    Unbelievable!! We don't see OT because rufus has a massive party of people already pulling his strings and it was felt he didn't need to trouble the 18 month waiting list! Sounds like we aren't missing anything, but I would be spitting feathers- you just want HELP!! Not necessarily financial, but input into what to do, where to look for aids. If it's any consolation my mum works in stroke rehabilitation and OT is notorious for chocolate teapot status, usually a frustration in their funding. X

  4. MamaDragon June 30, 2012 / 7:43 pm

    That is horrible. I used to work for Surrey County Council as specialist nurse, in Camberley. I left for reasons such as this.

    Not that you should have to, because you deserve the support from the NHS, but have you looked at second hand equipment? I've sourced wheel chairs and other equipment for patients on ebay, http://www.askdes.org.uk/,http://www.themobilitymarket.co.uk/, http://www.disabreg.pwp.blueyonder.co.uk/, and others.

    Wish and hope for better in Cornwall. I'd write to the papers as well, maybe try your MP? So so sorry you have to fight so hard, you are such an awesome mum and you are doing an inspiring job.

  5. Helen July 4, 2012 / 9:32 am

    This comment has been removed by the author.

  6. Helen July 4, 2012 / 9:49 am

    Hi, I just found your blog, so sorry to hear of your experiences, have you tried the physiotherapists for buggies etc, we live in Norfolk and our physio sourced a family who could offer a second hand adapted bike, there must be a way of accessing used items that others have outgrown. I'm afraid our experiences of OT, Phyaio and Speech & Language have been mixed, it seems to me an overhaul is needed nationally so that children with delay, disabillities etc are protected and given the best possible opportunities in life!
    You deserve the equipment, as has been suggested maybe go to the local press, you never know who will read it!
    Also, have you heard of Portage, they provide early years support. They will come to your home and spend time with the child with loads of different play ideas suitable to the child, a great service if you can get them in when needed, and not too late as was the case for us!
    Good luck with everything, and hope you have more support when you move!

  7. Mavis Cruet July 5, 2012 / 3:24 pm

    Well it seems like we may now be getting somewhere! With help from a new, and very proactive, paediatrician… Quite a palaver. What a system…

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