Sticky Blood-Hughes Syndrome Support

Another push for that elusive referral for myself and children

Having seen the right person privately for a couple of years now, and had my careful family research confirmed, for Hughes Syndrome, albeit seronegative, still we have no local care, almost total disbelief, institutional huffiness, which despite polite and firm requests is causing a terrible block, which ultimately could put my young children, let alone myself at terrible risk. Our new GP practice, literally fought for, a few years back, sports modern docs who really have not been dismissive, however it appears our East Anglian county with old Akenfield entrenched attitudes does not like to refer up to St Thomas'.

Especially if patients have ever had reason to raise legitimate questions regarding basic care.

There is disbelief at the local hospital and some slightly ruffled institutional feathers - apparently my son's 15 month and 4 day migraine, (yes he was stressed at school due to constantly being told off by staff for being ill, as of course attendance is scrutinized for Ofsted Results), however his medical history of flaring and agonizing stomach aches glossed over, also various other ailments such as mycoplasma pnuemonia. This child at the height of his migraine, was waking up to 12 times a night, not dropping of until after midnight, throwing up constantly and more worryingly developing weak/legs which would not work for a few minutes at a time and blacking out, all dismissed, whether reported by myself or husband. Now our daughter has a constant migraine, which has shifted on asprin, her history shows purpura and one strange platelet reading, a mild heart valve defect, plus various other horrible infections, including kidney problems which were not conclusive when young, like her mothers.

We do not feel safe, my own condition on asprin, has not been monitored or checked locally since 2001, when we left London, and my memory and cognitive function is getting worse, the migraines are back again, and my tiredness is off the scale.

Having copied the correct letters to St T's written by the right people, we are told we have to have a GP or consultant referral. I am beginning to wonder if we should go to Bulgaria, as we holiday there several times a year, and approach the team in Sofia directly and do it this way, I have two bulgarian friends with almost perfect english who would help. I am sure we could get reasonably priced appointments with our dwindling budget, although it will all eat into our funds for the children going to University, both bright, and top of the class in their subjects.

My husband is going on our behalf next week to firmly challenge the surgery into modern help, and also to point out that , as a family we make a very small dent on the local services. All my skin treatments done at home, all my physio done at home, my house fitted with water therapy bath and exercise equipment, counsellors employed to help my son cope with extreme pain, employed privately, when he was only allowed to attend school twice a week, etc etc. No expensive drugs etc etc.

We should be urgently referred, this is not to score institutional points, it is simply to have our basic needs met, with this referral to St Thomas' , the hospital contains mine and the children's old notes, it will simply act as expertise, so that our local hospital and surgery understand what they are dealing with. Our family have been sidelined for 10 years now, I am not saying we have no hospital care, and that there has been no kindness, there is just a lack of understanding about this disease and what we are telling them. Even letters with clinical diagnosis from the right person are still being treated with extreme caution and no action.

Perhaps they feel that they might be hit with a law suit, nothing could be further from our minds, the thought of lawyers getting fat out of our misery and the NHS being even more deprived of funds would not send us in that direction. This is about ignorance, and not being able to climb down from an institutional position, when really all we would say is thank you, and lets move forward from this point.


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