When my daughter's were born in 1981 and 1987 I didn't expect either of them to be affected by the amount of health problems they have now at the ages of 36 and 30. Both of them began in childhood and neither of them seemed to be taken seriously; it was either growing pains or stress or some other problem, mainly the family spinal problem. It seemd that our doctors didn't want to know.
Both girls were referred to specialists, who shrugged off their knee and leg problems; with my eldest because she was a 'big' girl (she was overweight for her age) and my youngest because she 'doesn't click when the joint is manipulated' we were frustrated and upset, mainly because they were both in pain and missing a lot of school. In fact I was prosecuted for my youngest' non-attendance when she was 13... I took her out of mainstream school for the final three years and home educated her.
LISA' STORY
At the age of 11, Lisa started with knee pain, it had her awake at night and unable to move. Behind her knees was burning hot and yet because they weren't swollen or red, she was sent for physio and given painkillers. Slowly, as she grew older, it was all of her joints affected, she struggled daily with dislocating kneecaps and ankles, even visits to A&E only brought a shaking head and shrugs of shoulders; even a full length plaster cast at one point, yet no-one seemed to want to name what was wrong. By the age of 16 she was registered as disabled, but it didn't stop her looking for work and started in retail at 17 with plenty of support.
Jumping forward, by the time Lisa was 23, she had enough and decided to follow one of her dreams, that was to go to college and study art. She received lots of support there, far more than school ever did and she passed everything with flying colours, eventually going to Bolton University at 26. On a break from Uni and home for the summer, she met her now husband Andrew, within nine moths she was inevitably pregnant!
It was then that she was referred to a rheumatologist, a professor no less, who took one look at her, listened to all the problems she had throughout her childhood, did a few tests of her joints and said 'You have hypermobility...I'm referring you for further investigation' I could have kissed him! So, she was finally diagnosed with a form of Lupus and Ehlers Danloss...Yay! She also has Hughes Syndrome which has led her to miscarry nine babies since having my Grandson Joseph, it's heartbreaking.
LAURA' STORY
Similarly to Lisa, Laura began having problems young, but, her problems began when, at the age of 4, I went to get her from nursery one day and her teacher told me that she was limping badly. Taking her straight to the doctor, I was shocked when he pulled her sock off and her ankle was badly swollen. No explanations, no fever or twisting it, no infection or bite, just very sore and swollen. It carried on from there when, age 7, she began to have pain behind her knees, for which the doctor gave her Diflam rub. By 11 she had problems with her back and hips, similar to Lisa, we were never away from the doctor and when she was finally referred, he took one look at her, wiggled her hips and knees about and told her " Growing pains and shortened hamstring", that was it, dismissed with physio!
As she aged, the pain in her body got worse, she started with horrendous migraines and was tired all the time. Trips to the doctor resulted in a vitamin D deficiency and low iron diagnosis, no mention a referral for specialist diagnoses given the family history and no follow up at all with treatments. One doctor said it was all in her mind, stress, that she should have Cognitive Behavioural Therapy, so she became very wary of officialdom. That was until we moved house and thus doctor surgery; a doctor asked to see her because of the cocktail of drugs she was on and he was so shocked that there had been no help. (I should also say that she is allergic to a lot of things as well as having eczema and asthma) So, a referral was ordered for a rheumatologist... You think it ends there with a diagnosis don't you? Oh no!
The letter arrived and it was a referral to good old Musculoskeletal Triage! Laura, after her experience of doctors was adamant that she wouldn't go, but after much persuasion, we went August 8th and the doctor couldn't have been nicer. She asked and listened, examined her and agreed that she really did need to see a rheumatologist...Eureka! But, that still isn't the end... a letter arrived a week later from St Lukes in Bradford confirming her referral and a doctor would decide if she needed to be referred to them within 12 weeks. That takes us up to October 31st.
SO...
What the heck has our NHS come to eh? People in genuine pain, being made to wait for urgent appointments because of others wasting doctors time by saying things are worse than they are or there is nothing wrong with them at all. We all know someone like that don't we? The person who has everything a human being can possibly have wrong, yet they live normally and get every bit of help available just when they need it. Why can't the powers that be see through them?
Watch this space...
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