They need therapy NOT a leaflet!

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We have waited 5 months to see a dietician as my daughter’s weight kept dropping and the list of foods she would eat became less and less. With a complex diagnosis no-one seemed to know exactly who she should see to help her, so as usual we were passed from pillar to post. We had high hopes that finally we could get some help and support.
The appointment went well. We did everything we were asked in terms of listing all she eats and drinks and giving a comprehensive background. All seemed good.

Yet once again all we left with was…a leaflet listing foods of different colours she may like to try!

Really? Do you not think I have googled similar in the last five months of waiting?

Dear dietician, my daughter needs help, not a leaflet.

A similar thing happened when her brother was referred to physiotherapy last year. We were added to a waiting list and it was months before we heard anything. Finally we were offered an ‘initial assessment’ which, in this case, was a home visit. Once again we went through all the motions and assessments and gave a full medical background. The therapists talked about how delayed our child was and suggested lots of things that could possible be done to help. I was getting excited. My child needed this service and it looked like we could finally see some progress. After all this is a child who was so physically delayed he never started to walk until three years old. She left without giving us another appointment. I should realise what that means by now.

A week later we received the report in the post with a leaflet with some exercises to do with our son that may help. A leaflet? She said he needed therapy yet all we were given was a leaflet!

Dear physiotherapist, my son needs help, not a leaflet!

Waiting to see a dietician and a physiotherapist was nothing compared to the wait we had trying to get both children diagnosed with autism. My son was first verbally diagnosed at just 21 months but it took until he was three years and nine months, two full years later, before he was officially diagnosed. His twin sister was first picked up at aged 3 but it was 23 months later before she had her formal diagnosis. That sort of wait is not uncommon. When you wait all that time to then be formally told your child has a life long communication disorder, and in my sons case significant learning difficulties too, you want and need so much. You want signposted to organisations that can help, to support groups, to professionals who can support your children. You need people to be there to support your children and yourself as you start this new journey.

Instead I left both times with just a leaflet in my hand.

I am not sure what I thought I would get but that leaflet seemed so little, so pathetic and so inadequate.

My children both desperately need speech and language support. My son is now seven and a half and still non verbal. Neither of them have received any direct support for almost two years. Of course, if you asked the service why, they would say they have helped us. In what way? Why of course they sent me out some leaflets!!

I have a huge collection of leaflets now. I feel fobbed off by them to be honest. The money spent on these leaflets could so easily go towards real therapy that could make a huge difference to my children and so many more.

If I make a formal complaint I know exactly what will happen. I will be posted out another leaflet on my rights as a patient and where to complain to.

I haveaccess to the Internet. I can work Google and I am able to find this information myself.

I do not need another leaflet!

Dear health service,

I love you dearly but I feel so let down sometimes. You seem to have a love affair with leaflets and I don’t. There are times when they have their uses but please remember something very important:

My children need real help and that will not come from a leaflet.

Could we get more support from professionals and less leaflets please?

Thank you!

 

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9 thoughts on “They need therapy NOT a leaflet!

  1. I totally agree! I’ve had more leaflets than I care to think about. I’m still waiting for physio therapy for my daughter and she’s just been sent an appointment for her 6 monthly CT scan which is nearly 3 months late. Leaflets, I do not need, help I do!

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  2. Two ideas for child with autism who finds eating wide selection of foods difficult, as advised by our NHS dietician. May sound counterintuitive but worked to reduce sensory sensitivity. Crisps like quavers which melt in your mouth, or meringues. That helps with tolerance of textured food. Eating alone where you aren’t being watched or “encouraged” – so the opposite of a family meal might work better. Dd hated sitting at table, made her very stressed. Two ideas from the mother of a child with autism (me) Traffic Lights – food on a stick in red amber and green (red pepper, orange pepper and green pepper) this converted my son to peppers and a lot of raw veg. “Muscles from Brussels” was a good joke to get them to laugh and relax in prescence of green veg, no need to actually eat it, (you flex your biceps at the same time) I also recommend, just for the pleasure of reading it, Avocado Baby by John Burningham. All three of my children have lots of sensory issues around food, and a lot was to do with anxiety over being made to eat something that felt wrong to them, either too gloopy or too green or horrible strong smell. In order to reduce the anxiety I focussed on trying to make some foods seem less threatening, although obviously I couldn’t take away the sensory issues. Appetite is reduced when a child is stressed, cortisol suppresses it, so we don’t feel hungry when we are running away from a lion but concentrate on dealing with the challenge instead. Chewing also feels like too much trouble when you are conserving your energy to deal with stress. Obviously it is a vicious circle because the less energy you have the less you want to eat or chew. I suppose the bottom line is that you need to reduce the external stress to make children want to eat when they are anxious.

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  3. On the plus side – you got a leaflet … when my son was told we think he might have “KLS” we were then told it was rare, we should google it and see what we thought!

    I went on and produced a leaflet – which I now send out to other families… the support lies with those families, but even now the Dr’s can’t tell you who they are cause of confidentiality … it’s crazy as we could support each other….

    The most support I have ever found is online – families that are living through the same thing or similar from around the world, finding out what works for them, what improves life for them and learning how to implement that ourselves…

    File the reports, file the leaflets – take them to meetings… and follow up – write and thank them for their support, in the case of your daughter follow the suggestions and write back advising they are not working, ask what they can provide next – explain you are concerned and are seeking their advice, what they suggested did not work and ask what the next steps are, give them a deadline to respond… keep writing…

    With you son, re therapy, write back – thank them for the excercises, tell them about his lack of progress and quote that they mentioned therapy, ask them when it will begin….

    The best advice I ever got was when I was having problems with school – my son was not yet diagnosed and I was struggling … my GP told me to keep hasseling until you are noticed – if that means ringing daily then you have to do it – the person making the most noise gets dealt with first … I did not believe it – I am not that person …. I was then struggling with medical stuff, wanted a referral to a certain specialist in London and my GP said he couldn’t … he did – after daily phone calls, asking had he done it yet … he then researched a more local contact and we got a diagnoses… he said to me later he did not know how I got the referral, and I reminded him I had taken his advice and rung him daily until he did it – he then smiled and said it works then…. 🙂

    I also learnt a box of biscuits for the receptionist … to say thank you for the support (ie answering the phone and putting you through) went a long way… creating a relationship with this person meant they would pass on your messages, remind the boss to call and be on your side …. never hurt… and then occassionally if the Dr does something right – a thank you there, again is noted and makes them much more approachable …. and a “sorry” if you have become a pain in their backside, once you get the support your child needs. With limited budgets – those who make the most noise do get the most attention!

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  4. I had to smile at this post because I am suffering from anxiety and while I was waiting for my CBT I received, you guessed it, a leaflet. Actually TWO leaflets lol. To be honest, when it comes to my son’s autism, I have done the research because we got the diagnosis and were sent away with the number for the local disability center and advice about DLA but nothing else. As someone has said..the best support and advice can be found online by people like us – the parents and those who are autistic themselves. #SpectrumSunday

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  5. I agree! We got a long complicated report from OT and a leaflet and that was that. I think indiviual therapists are often in an impossible position of having caseloads too large to manage so that actual face to face therapy time is squeezed to the extent that providing leaflets seem like a good plan B. It’s not though is it. What is the solution? Do we need to put more political pressure on our MP’s?

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  6. This makes me so angry! It drives me totally insane. When we received Hayden’s diagnosis I was expecting a whole new world of support to open up, but yet all I got was a pile of leaflets! I completely get where you are coming from and whole heartedly agree! Thank you for joining me on #spectrumsunday. I really hope you join me again this week xx

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