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 have 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?