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!

 

Pass it along…and leave it to mum

imageWhat qualifications did I need to become a mum? Very little, if any.

Teachers study for years, as do speech therapists, occupational therapists, physiotherapists, social workers and psychologists.

I am just a mum. I don’t mean that in any way to put down what I do. But my role is very different to the specialists named above. My job is to love, nurture, support, encourage and guide my children to become the best that they can be in life.

For my children with additional support needs that means I will be changing nappies much longer than average, still teaching basic sounds and numbers long after others, and spending that bit longer supporting my children (possibly way into adulthood). That I can, and am happy, to do. I will happily spend my evenings singing nursery rhymes, playing board games and doing homework. I have no issue with cooking, cleaning, washing and other seemingly mundane house hold chores.That is what being a parent entails.

But increasingly I feel I am being asked to be way more than a parent to my children.

As financial pressures increase upon the services my children depend upon to support them, there is a current trend of ‘pass it along’. Basically for so many professionals their time with my child is very restricted. Their roles are goal oriented where after a few sessions it is expected they can record progress and show they are making a difference. Then they show me how to do what they have started and move on.

So for example, the speech therapist may visit and introduce some basic visuals. He or she may check my son or daughter appears to understand, then proceed to give me a quick demonstration and hey presto…they vanish off the scene leaving me to do their job! They have little choice really. They have referrals coming out their ears and fewer resources at their disposal. So ‘pass it along and leave it to mum’ is the only way for them to survive.

So now I am a parent and suddenly a speech therapist too. That adds a bit of pressure.

My daughter was finally seen by a physiotherapist this week. She was lovely and very thorough. We now have a much clearer understanding of some of my daughter’s physical difficulties. More referrals will now be made (the hospitals must think we have a season ticket!). When I asked specifically where we go from here I was told that hopefully someone can show the school some exercises and we will also be sent leaflets full of things to do at home too. No time to come and teach me. It is expected I will be able to work it out myself, without all their years of specialist training. No time, no resources, not enough staff. Pass it on; discharge.

So now I am a parent, a speech therapist and now a physiotherapist too? I can sense the washing pile mounting up more and more!

The occupational therapist came this week too. Her case load is more than some schools have on their entire role! There was insufficient time (as usual) to complete the paperwork she wanted to do that day so a pile was left for me to complete as soon as possible. And of course she left us with more practical ideas to support the children. No time to teach but ‘the sheets will explain’…where have I heard that before?

Now I am a parent, a speech therapist, a physiotherapist, and an occupational therapist!

Do I really need to tell you what sort of thing the psychologist meeting was about? I think you get the picture!

Of course I could easily chose just to default and be ‘simply’ mum. But the reason my children were referred and accepted by all these professionals is because there was a need for their services. Their input could apparently ‘add value’ to my children’s lives. They could apparently help us.

So while I am left with not only the raw emotions of finding out my child has yet more physical issues and needs, and passed to yet more health professionals and departments, I am also forced to take on roles I am neither qualified or trained to do.

And when it all unravels and my child still can’t talk or use visuals in years to come, or my daughter is still unable to carry out certain physical tasks or is still crippled by anxiety who will accept responsibility?

They will say the have done their best. They did exactly what the system expected them to do. They passed it along…and left it with mum.

Meanwhile poor mum has little time left just to be a mum. She is far too busy trying to be the professional needed for her children.

It’s just she has no-one left to pass it all along to.

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