"Support for my son's Atopic Eczema"

About: New Cross Hospital / Dermatology New Cross Hospital / Paediatrics Wolverhampton City PCT

(as a relative),

My son has been diagnosed with atopic eczema since 3months old. It has been an ongoing battle to find a better way of easing his pain and suffering. My son is 21months old and I have been to every doctor in my surgery at least twice within his lifetime. He has been on various creams and nothing seemed to work. For four months, I repeatedly asked the doctors to refer my son to a dermatologist, but they ignored my requests, until my son ended up in hospital with herpes in December. But we still hadn’t seen a dermatologist. Then he had impetigo in January, but still no dermatologist. Then he got herpes again in February, and finally he would be seen by a dermatologist. It took 5 minutes for the dermatologist to tell me my son had severe eczema and he was on the wrong hydrocortisone. I had thought my fight was over and was relieved to have something good for my son, but no.

My son has a prescription for Tubifast vest and tights, I was told by various doctors they were not allowed to prescribe more then two because they cost £18 each, and I was already getting more than was allowed. I had them phone the PCT and talked to chemist and still they tried their best, but could not get any more on one prescription. I was told by the prescribing support team that if my son was in clinical need of the garments then he should be able to get them. I have been asking for seven on one prescription to last four weeks, which is four washes. They have helped my son’s skin look completely normal, it doesn’t stop the eczema being there but it stops him from scratching freely without us knowing at night time. He sleeps well now and is even acting like a terrible two year old should :-)

I am shocked that I have been fighting for these garments for almost a year now, and I had written a paper on how my son’s eczema affects him. Yesterday, I gave my paper to a lady from the Primary Care Trust. She rang this morning and said she had phoned the senior practitioner of Duncan Street surgery, Wolverhampton, and they had said yes and signed off the prescription for seven garments. I wonder how many parents with children that have eczema don’t know that there is a way to calm the eczema down to the state that it looks like it's not there, and allows there children to sleep more. The doctors have the items available but don’t seem to inform people. I believe there should be some sort a care plan in place, and I feel sorry for parents out there with no support. I need to know if there is anyone else fighting to get something better done, as I know it can be done and how I should do it, my son has suffered far to long and frankly, so have me and my partner. Please, can any one help?

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Response from Charlotte Hall, Deputy Director of Nursing & Midwifery - Quality and Safety, The Royal Wolverhampton Hospitals NHS Trust

Dear atopiceczema22

I was very sorry to read about your very poor experience from primary care. You are able to contact the PCT and raise your concerns with them to ensure approripate information for ecxema sufferers is avaiable and this can be done either through their website or by contacting the GP practice manager.

Within our Trust and here at New Cross, we have a lot of information in our dermatology department and I shall approach the PCT group and raise your concerns with them suggesting a source of information for them to use and devising a care pathway approach as the way forward to support patients in a similar situation as yourself.

In the meantime I do hope your child's skin continues to improve

Regards Charlotte Hall

Deputy Chief Nurse

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Update posted by atopiceczema22 (a relative)

Thank you Charlotte Hall.

It's great to hear people offering advice, however fortunately i have been to the PCT and they had my paper and care plan notes for under 24 hours and the doctors immediately gave in and we are now prescribed seven garments on one prescription, and the doctors were always allowed to anyway but kept telling me no.

Unfortunately the PCT lady said that she is filing the complaint, but if no other parents complain then it cant really get noticed to the full extent.

I was hoping if there is anyone else suffering, would you possibly inform them that they also have a right to complain. I have written notes on a care plan but am not sure if they will do anything about it, and thank you for going to the dermatology department that would be great.

I'd really like to know any progress on this as if nothing gets done I'm going to pursue as much as i can.

Thank you very much again for your kind words, it means so much, oh and my son is so much better with his eczema he hardly ever scratches only at night time. He is now off of antihistamines too.

Response from Patient Opinion

Posted on behalf of Duncan Street Practice:

I am so sorry that you have not had a very good patient experience with regard to your visits to the surgery and subsequently with regard to your son's dressings.

We were obviously misinformed when we took advice from our Prescribing Team at the PCT. Please accept our sincere apologies with regard to your son's care and the distress that this issue has caused you and your family. We are taking these comments very seriously and will discuss this issue as a Significant Event in the surgery and hopefully we can all learn from this.

If you would like to contact the surgery we can arrange for you to meet myself and a GP Partner and hopefully restore your confidence in this practice.

Please accept our apologies in this matter once again.

Jacqui Squire, Practice Manager

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Update posted by atopiceczema22 (a relative)

im glad to say I had an apology from the doctors them selves in writting and face to face, unfortunately. the mistake again was the doctor asked me to go back on here and say it was cleared up.

its taken me two years but yes it was cleared up, however it should never have taken that long for my self to be heard and my son has been left with unecarsary scares, and I have met various people who have the same ongoing problem.

so thankyou for us being seen to was actually quicker than most. I hope if anyone reads this then you are aware that it is probably happeing in your own surgery, please dont ignore this problem and please help these parents get there children seen to quicker. thanks again for your reply xxx