Dyspraxia

Sandra7

Our daughter was diagnosed with developmental verbal Dyspraxia at 7 after 4years of speech therapy. She started school with an Educational Statement nearly 30 years ago. He teachers and other professionals who were involved in intervention all identified signs of Physical dyspraxia but the school would not invest in a official diagnosis because she was already getting the maximum amount of support and an official diagnosis would not result in additional support. While at college she did an assessment that clearly identified coordination Dyspraxia but we were never able to get any paperwork to support this. After recent issues about her PIP being stopped it has really brought it home how as a result of endless consultations with experts how little Dyspraxia is understood   When she couldn’t speak it was clear she had problems but now first impressions don’t show how hard our daughter has to work to do day to day things. She certainly could not cope without support. Since leaving school she has virtually no support apart from help getting a job. She gets fatigued and could not hold down a full time job but has no way of supporting why this is the case. I understand assessments for Dyspraxia are not done after a person reaches 18. What I need is some form of professional evidence that identifies her current needs. I spoke to her GP about any support that could be available to her but he just looked blank. We have coped up to now because we are here for our daughter. Getting people to understand her difficulties are like banging your head against brick wall. They can see she is a little different but don realise how server her difficulties. She needs support beyond our understanding of her needs. Any suggestions?

chiarieds

Hi @Sandra7 - & welcome to the community. I'm sorry for the difficulties your daughter & yourselves continue to face, especially with an unsupportive GP. Do you think you could try another GP in the practice (If this is feasible)?

I'm sure you've likely come across this website before, but posting this link just in case: https://dyspraxiafoundation.org.uk/    tho looking at their website, altho it has a section for adults, it makes me wonder on the whole if adults with dyspraxia almost fall by the wayside. I would still tend to think that a physio or occupational therapist may be able to evaluate your daughter's current needs.

As far as her PIP being stopped, did you try a Mandatory Reconsideration (MR) where another decision maker looks at everything again? Altho it says you only have a month to send this off, you can in fact do a MR later, so long as it's within 13 months of a decision. You have to have good cause, but not even knowing about this can be one.

Jimm_Alumni

Hi @Sandra7, thank you for explaining the whole story to us. It feels like you've fallen through several gaps in structures that should have helped more, but didn't because "it wouldn't help us" without thinking of the future.

Has the GP not referred her to a physiotherapist or occupational therapist? The NHS advice page on Dyspraxia lists these as the avenues of getting a diagnosis and then treatments that can help manage any issues. There is also a charity that specialises in Dyspraxia, children, adults and parents of those with dyspraxia. It's called the Dyspraxia Foundation. They may be able to give more specialised advice and information.

Keep in touch with how you are doing. It's hard to know what support is even available, especially when every support structure in the country is stretched so thin right now. Help is out there however, I hope we can help you find it.

Sandra7

Firstly yes we have asked for a mandatory reconsideration within the 1 month period with a letter from her doctor saying her Ned’s have not reduced. Interesting comments about our daughter’s GP not being supportive. I’ve never thought of it in that way but just that he knew little about our daughter’s condition and in particular could not come up with any ideas of where we could access support for her. She was identified as having problems from an early age before starting school. Once she started school all the services focused on her education. She had a team that supported her progress including educational psychologists, school doctor, specialist teachers & Speech therapists saw her at school once a week. Once she left school everything stopped. We have moved to different counties twice since diagnosis and therefore have changed GPs. When we went to her last GP about pains in her legs that we felt could be related to her Dyspraxia the GP stopped us because he made no sense of what we were talking about when we referred to her speech difficulties saying there was nothing on her records. Last month we requested copies of all her paper records at her current GP and were relieved to find her early referrals have not been lost in some black hole. All the records make sense to me but don’t give a clear overview of where she is now to another person who unlike me hasn’t listened to endless experts explaining things. The problem with Dyspraxia is it’s hidden and another person can’t see what is going wrong. I’ve had dealings with the Dyspraxia Foundation over the years and I not overly impressed. It is spread very thin and unlike other charities I’ve belonged to such as Afasic (for children and families of children with speech difficulties) seems to have little professional support. Our daughter joined a support group in her early 20s and it was like the blind leading the blind. I had to get her to these meetings that were held at a Weatherspoons and I was told because I didn’t have Dyspraxia I was not allowed to stay. This would have seemed fair if the people organising them had Dyspraxia or were experts in some way.  She attended 4or 5 meetings and made some very strange contacts there. I put a stop to her going after she came back from an evening with them covered in large bruises.  I will never know what happened because of her communication difficulties. All I know is something was not right but I wasn’t able to do anything about it. Recently I’ve phoned their support line many times but can’t get through.  I had hoped that they might be able to suggest ways of getting an assessment with clout. I know the NHS site suggests physiotherapists or occupational therapists but my experience of using the speech therapist services are unless you get someone with the right experience and understanding of dyspraxia you are just treading water. It took 4 years of being told by the speech therapist service they knew what our daughter’s problem was and that she had the capacity to talk before we asked for a second opinion because she was making little progress. The second opinion open new doors to us and got her the right help. So this is the turning point I feel in at. Who do I ask to get her the right support?

Jimm_Alumni

I'm sorry that everything I tried to signpost in my previous post are things you've already tried and had horrible experiences with. Dyspraxia something that I also do not know much about, but I will try to help as much as I can.

Going back to your GP, you said when you went for a second opinion after the speech therapists it opened up a lot of doors. Have you considered, as mentioned, getting a second GP opinion? One that is more supportive. Even if they do not know the condition well, no doctor can memorise every condition, they should still be supportive of their patients.

While I have never gone through anything as difficult as what you and your daughter are going, or have gone, through. I understand the difficulties in getting GPs or un-specialised medical professionals to listen about medical conditions they don't understand. I personally had a lot of difficulty getting an ADHD diagnosis as an adult, with one GP even suggesting that if you make it to adulthood without being diagnosed you cannot have ADHD. 

Finally, I find your description of your experience with the support group disturbing. Were they associated with Dyspraxia Foundation and did you talk to the charity HQ about the experience at all?

Sandra7

Thank you Jimm for your listening ear and good advice. As for your questions about the Dyspraxia Support group. We found them through the Dyspraxia Foundation. Our daughter would not say much about what had happened but she did agree to get checked out at the hospital. I could not face confronting the woman who asked me to leave Weatherspoons. The group stopped meetings shortly afterwards. With hindsight I should have still raised my concerns with The Dyspraxia Foundation. The only support we’ve been offered from the Dyspraxia Foundation apart from information about the condition which we already know inside out is local support groups. The local support groups are not always that local and seem to be organised by anyone who wishes to set up a group. Maybe things have improved since the uncovering of Jimmy Savile but I haven’t been able to contact them on the help line to know. 

Jimm_Alumni

I did a little searching @Sandra7 and found this charity that covers all neurological conditions Home - The Brain Charity. Perhaps you can try reaching out to them and let us know how it goes?

Sandra7

Today I am feeling in a better place after being at rock bottom yesterday.  In the morning I saw a lovely lady at Citizen's Advice about what I needed to do about our MR if it turned down and about gathering further evidence in the meantime.  She recommended that I should at least ask my GP if they could fund an OT assessment for our daughter.  Spoke to our GP later and was not surprised to get a clear cut.  However I was not prepared to be made to feel I had mislead the GP about her condition of Dyspraxia when I talked about her assessment.  I tried to explain that she had been formally assessed but the written reports were either old and outdated or had been lost  (probably in the Christmas post back in 2006) and copies had never been forthcoming. The evidence of these reports are in her medical records and the missing report has been recorded in her medical records even if it's not there, which I was unaware of until I asked for copies of everything.  I could not shake off the dreadful feeling that I had totally messed up and other people thought badly of me.  Fortunately talking it through with another person who was just prepared to listen I was reassured that I was just fighting for a person (our daughter) who has been failed by the system. Without much input from this person, I realised that I was right to do everything that I have.  When the system rejects reasonable demands they always make you feel that its you in the wrong. Today I have felt a new confidence in my decision making.  I have spoken to a private OT and paid for our daughter to have a private assessment.  It might not achieve what I hope for but it will be good for her to be able to wave a piece of paper at people who have no idea about her difficulties.  It should explain concisely her complex difficulties when she does not have the skills to communicate effectively.  Sometimes you just have to believe that, what you are doing is a good way forward, even if people make you doubt yourself 

Hannah_Alumni

Hello @Sandra7 I'm sorry you had such a rigmarole with the GP but glad to hear you have appointments sorted for your daughter. Please keep us updated on how they go!