"Caring for my son who has fragile skin"
Posted by patientsmum (as ),
My son was born with a rare skin condition. When he was born he had extremely fragile skin. We were given excellent neonatal unit care, for which I have already left a glowing review. Since then, however, the health service has failed us at every step of the way.
As parents who have gone through a horrific time at birth (for example, seeing your child with no skin), we have never been offered trauma counselling despite repeatedly asking for it.
Also, our son's condition means that he now produces too much skin, so that areas of his body effectively turn into an uncomfortable itchy scale that can be painful and reduce mobility. We discovered by accident that immersing him into a hydrotherapy pool was the only way to control this. We reported this to our consultants and tried to press the hospital and our GP to establish this as a routine - in the US, treatment of this condition involves one hour long soaks, three times a week. However, despite begging and pleading over 18 months, the best we could achieve was sympathy and letters of support from the hospital; patronising responses from the GP followed by being simply ignored by them. No follow up, no interest, no care. (By contract, other GP surgeries routinely refer cases of this condition to hydrotherapy, but obviously in our case there was not sufficient interest to research any further).
What could have been done better? We have stumbled across something really helpful, not just for us but for other families coping with a very difficult situation on a daily basis. So perhaps the appropriate response would have been to be pro active and not let go of this issue until we had an appointment system in place for our son. Just because something is not routine today, does not mean that it shouldn't be routine tomorrow. That is exactly how progress is made.
In addition to which, during this process, I have discovered that the hydrotherapy pool at Kingsmill hospital is managed by one person (so it is closed if she is on holiday or off sick) and only until midday. Plus, it is closed during the Christmas and Easter holidays (whereas here I am, thinking that health services are required 24/7, just as people are sick 24/7). This is a pool that has been built, is carefully monitored and chemicalised and kept warm - all with tax payers' money! I simply cannot see the justification of that.
The pressure that this situation put on us as a family has been indescribable. As anyone can imagine, the only feelings that can arise from such a situation are ones of helplessness, anger and depression. Basically, I feel like if dealing with a rare disorder, the health service will consistently turn its back on it until it hopefully goes away.
What did we do? We bought our own hydrotherapy bath at the enormous cost of £17, 000 (I have been told that this is fine then, as we must obviously be able to afford it. My experience is that in reality, in this situation, one will cripple oneself financially to ensure a child's health). My son's skin is unrecognisable; he is comfortable and has vastly better mobility that all other children I have met with the same condition. The hard, brown scale that was taking him over has mainly gone.
This in turn is saving the health service thousands - we are using a fraction of the emollients that we would otherwise have needed. Also, we hardly ever need antibiotic treatment as he only has the odd flare-up (unlike maybe up to 10 per year that he may otherwise have had).
The injustice of this and the lousy, unhelpful attitudes we have encountered have completely destroyed the faith we previously had in the health service. We have encountered arguably the most detrimental attitude in any company, whether public or private - no help can be offered, no new ideas are accepted, no new methodologies created, because 'that's not the way we do things' and 'that's not the job of this department'.