"Penalised for going private"

About: Addenbrooke's Hospital / Paediatrics Great Ormond Street Hospital Central London Site / Paediatrics

(as a relative),

Grandson developed eczema at about six months old (immediately after his injections). He also started showing symptoms of IBS at around nine or ten months old after an upset tummy.

He was taken by his parents to his GP. He was given various potions for his skin, and some tummy treatments. neither worked.

My grandson was referred to Addenbrooks Hospital in Cambridge for his bowel problems, which is over 30 miles away from where they live. This meant an hour's journey, park and ride, taking time off work.

They treated the symptoms as for constipation, prescribing several doses of Movicol over a long period of time to which he had an extreme allergic reaction and his ezcema became even worse.

It took 4 months for his skin to heal, after, in desperation we went privately to a dermatologist - who was horrified and prescribed low dose steroids, which cleared up the skin and improved the bowel.

We are now facing real problems.

As Addenbrooks were not able to deal effectively with my grandson, insisting he was just constipated, the private doctor suggested we see - a Pediatric Gastroenterologist at Great Ormond Street Hospital. The doctor was not convinced that his skin and bowel problems weren't related, and felt Addenbrooks should have recognised that, instead of just treating him for constipation.

We went to Great Ormond street Hospital in September. The doctor was horrified by my grandson's condition, and set out a suitable course of action, but stated that it was the responsibility of Addenbrooks Hospital, the doctor felt this should have been identified by them and treated by them.

As a result of our visit to Greatt Ormond Street to see the doctor, we were given to understand that the doctor would contact Addenbrooks and try to set the record straight which would facilitate an appointment to rectify their previously inadequate service. As the treatment advised by the doctor included colonoscopy and various other invasive exploration,the doctor suggested that they would approach Addenbrooks and explain things. The doctor believed that as Addenbrooks had messed up, they should accept to treat him.

We are not insured so cannot afford this, particularly as we were told the NHS have failed us.

Result.... Nothing.

The doctor appears to have been unable to persuade Addenbrooks that they have failed to treat my grandson properly, and in any case as we went privately, they are refusing to acknowledge that my grandson can now be treated on the NHS.

We only went privately on the advice of another doctor, because Addenbrooks were so completely ineffective.

My grandson is still tearing his skin off, despite all the so-called accepted treatments and oils and ointments, which do not work.

The prednisolone the doctor prescribed cleared up the skin, and assisted the bowel problems, but another doctor felt that the steroids, despite being a low dose, would mask any bowel problems and make diagnosis difficult.

My grandson is still having to wear nappies because his bowel problems are extreme and ebb and flow like a roller-coaster.

His parents are at their wits end, as their GP will not assist as there was a private consultation (because we got no where with the NHS).

We have a five year old who is now suffering terribly, and a medical profession that seems to be completely unable to get it together. This has gone on for years, so we would appreciate all the help, advice and assistance that you can give.

The treatment and advice we have received from two doctors has been excellent, but we feel that as we were forced to go privately, we have now successfully managed to make our poor grandson ineligible for the NHS treatment he should have got in the first place.

There seems to be no effective means of communication between the private sector and the NHS.

The result is a little boy who, although not suffering from a life threatening ailment, is extremely distressed for most of the time. His schooling is being interrupted, his brother is also affected, his parents are stressed and under extreme pressure and yet all they get from the NHS is... "there's nothing we can do! "


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Response from Nicola Hallows, Complaints and PALS Manager, Cambridge University Hospitals NHS Foundation Trust

Thank you for taking the time to tell us about your Grandson and the problems that have arisen with his care and treatment. I am very sorry to learn that he is so distressed and I am concerned about your report of all the difficulties which have been experienced by him and his family, and that you have not managed to find a way forward. Addenbrooke's would be pleased to look into your Grandson's situation if you would like to contact the Patient Advice and Liaison Service on 01223 216756 or email pals@addenbrookes.nhs.uk.

Once again, thank you for your comments, and please do contact us so that we can loook into your Grandson's circumstances.

Complaints and PALS Manager

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