Where the NHS get it wrong and the repercussions
Health Resources Page
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Many families go through the chaos of the health service, sometimes with great results, other times with diabolical endings. Today, Charlotte Mellor of Through Scarletts Eyes is our guest blogger and shares her experience with you.
My daughter and the health service
My daughter Scarlett aged 4 was born blind. Diagnosed at four and a half months with Optic Nerve Hypoplasia, she has an untreatable incurable condition that has left her with no sight. Sound difficult? Well that is just the tip of a massive ice berg, and the mass of complications in its wake.
The main additional health issues that have arisen from Scarlett’s sight are sleep problems and behavioural and developmental issues. And as for mummy, where do I begin to be able to cope with the impact that this has on my own health.
Visually impaired children are renowned for being bad sleepers and bad is a kind word. Through my role as running throughscarlettseyes.com, the parents support, information and resource sharing network I have had many pleas from parents on the very edge of insanity due to the torture of sleep deprivation. I myself have been put on medication when driven to this tipping point. So what do the health care professionals do to help… well in my opinion pretty much nothing.
There is a drug that can help sleep called Melatonin, but the many hours spent in tears and breaking down in the community paediatrician’s office did not lead me to what I can only describe as my miracle drug. It was more hours spent in tears breaking down over Google and a keyboard that lead there. Now the effects of Melatonin aren’t proven to work on all children, it’s expensive and GP’s are very reluctant to prescribe. Regardless of that it has helped many visually impaired children and I think it should have been offered. Offered before the effects of sleep deprivation could kick in, offered before a complete reverse of night and day, offered before the missed days out, expensive nursery sessions. To me it basically says: “unless you go and find out for yourself then we’re not going to tell you”.
The place that is supposed to give you the answers, support, guidance and help not only your child but you to live a healthy happy life doesn’t necessarily deliver. This questioned my whole faith in the NHS and the medical support I was offered. As a result internet searches and blogs became my path to enlightenment and arming YOURSELF with knowledge and self-empowerment through parent to parent support.
There is a lot of debate around children and the VI debate. Some of the traits of a child who have an eye condition create behaviours that are very similar to those of children who have autism.
When the services working with Scarlett tried their tried and tested methods without much luck, the question is posed, is there an additional disability?
Scarlett’s unique way of developing has left many people stumped. And with only having input from the VI team rather than a team that could help diagnose, treat and identify an additional disability, it has become increasingly hard to tap into Scarlett in order to aide her development and learning. For example, Scarlett was taken off the portage waiting list as she had input from VI, but surely if there is a suspected additional disability there, professional or people who work with this potential disability should also have an input.
It took lots of reading by myself and a wonderfully helpful VI team to try some of the methods which could maybe help Scarlett. But neither I or the VI team are specialists and the task of trying to use some sensory integration methods with Scarlett during her VI lessons should not have been left to us.
So where does the problem lie?
- With Salford who doesn’t have an Occupational Therapist, to offer Scarlett, with the correct training to address these issues?
- With the CAMHS department, who have yet to meet or work with Scarlett due to limited spaces?
- A lack of co-ordination in the services to deliver a whole round care plan to help Scarlett?
This problem still hangs over my head like a black cloud, trying to learn to decipher the enigma which is my daughter shouldn’t be a worry that is plagued by parents. If that was my job I would have trained in the field. Lack of professionals, massive waiting lists, un-coordinating services, delays in diagnosis.
I am a firm believer in early intervention, but how can this intervention start when your not sure what your dealing with?
Does this all ring a bell?
What have your health experiences been like? Can you relate to Charlotte’s story? What would have helped you?
If you could give one tip to the family of a newly diagnosed child, what would it be?