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| Help and Support - A-T National Clinics - Rupert's Story | A A A |
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RUPERT’S STORY Here Rupert recounts his experience of going to the Papworth clinic, and below, Graham offers a parent’s impressions. Rupert writes: I was Papworth clinic’s first visitor with A-T. There were a lot of tests and examinations but they weren’t as bad as I thought they would be, and although there was a bit of waiting about I was pleased to have a room and bathroom of my own where I and my parent could both sleep. In between tests during the day we did a crossword, or went to visit the grounds. The food was good too. I was glad that through all the examinations all questions were addressed to me. Although Mum was there for company she was not involved and as far as the Doctors were concerned they were only interested in me and what I had to say. All the staff were very friendly and relaxed. On the return visit with Graham [see below] I really enjoyed the consultations and learnt things about how I could help maintain my own health better. Before I went I was anxious about how much my immune system might not work very well. I was shown the results of all the tests and was pleased to see that I scored quite high in certain areas and was able to see what are the areas I should watch out for. I got a kick out of realising how healthy I was. Now I know much more what my strengths and weaknesses are and how to deal with things like colds or other infections I might get. Various other things were suggested like a liquid thickener to help swallowing which I use all the time now. I also feel good about the fact that I don’t need to go back to Papworth for a year and that they know me there now and would be able to spot anything that might be of concern. As Dr Exley said, “It’s all to play for” in my life now. A PARENT’S IMPRESSIONS Graham writes: When Rupert went to Papworth Hospital to undergo tests there were, of course, a few anxieties and reservations in my mind. He was to be monitored as to his condition of health in relation to effects known to be associated with Ataxia-Telangiectasia. Would it be an unpleasant experience? Would it result in depressing news? Would it offer false hopes? Would it have been better to let sleeping dogs lie? Having arrived at the hospital for the weekend of examination there was the immediate doubt in my mind that the visit would all be for the Doctor’s benefit of research and not of direct benefit to Rupert. Nothing could have been further from the truth. Rupert was welcomed, not simply as a source of data, but was comprehensively taken under the care of the Hospital which, with its specialist nature, is able to provide services with an understanding not available anywhere else. They now have a more detailed, joined-up-thinking, portrait of Rupert and his individual case than exists anywhere else. In the future, through the on-going attention of (in his case) annual visits his health will be checked up on by the best Doctors in the field. This way, any possible complication stands the very best chance of being averted. Unlike the rest of us, who may have underlying conditions not known about, adults with A-T are known to have certain health pre-dispositions. For these to be looked at and diagnosed carefully by experts in the field is a great weapon in the endeavour to keep as healthy as possible. The thorough check-over included, besides the medical tests, visits by a physiotherapist, occupational therapist, dietician, and speech and language specialist. Subsequent contact was also made with everyone concerned with Rupert’s case (local and college GPs, social workers and care officers) so that all concerned should benefit from Papworth’s overall knowledge and liaison. From now on everyone should ‘sing from the same song-sheet’ regarding Rupert. If one were to ask for such a check up as a private paying patient it would, of course, be very expensive, possibly prohibitively so. As it is the whole thing is NHS funded. Rupert didn’t find the tests themselves (blood tests, breathing and diaphragm tests, Video Fluoroscopy, X-ray etc) as unpleasant as he might have feared. They were certainly exhaustive but handled very efficiently and pleasantly – some, like the blowing tests, were even fun. Within this wide ranging check up, more specific tests were addressed to known areas of concern with A-T patients. Where it is already known that A-T patients may have a predisposition towards difficulties with the immune system and certain respiratory conditions, it was a great relief to Rupert to be told more specifically where his strengths and weaknesses lay in these respects; to know that his on-going stability was going to be monitored by the staff at Papworth and that any changes could quickly be followed by action that would make it much more likely that he will be able to maintain his normal health level. Papworth itself is a nice place with very attentive and caring staff all of whom seemed to have plenty of time to really get to know Rupert. It was a very different hospital experience from that at big general hospitals with too many patients and over-worked staff. I am re-assured to know that Papworth has an international reputation as a cutting-edge research hospital. The two specialists that are keen to engage with people with A-T are Dr Shneerson, (whose speciality is respiratory complications), and Dr Exley, (an immunologist with special concern in genetic factors). At the second visit these two gave detailed and open feedback following the results of all the tests and were concerned, not only with how to combat the condition of A-T in the future, but also to put their best skills and advice at the service of those patients who, like Rupert, were now under their watching care. |
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