Tuesday, August 31, 2010

Anna's Referral Story

I'm Anna Burton and have met you [Amanda] at support group meetings when they used to be held and I went to the eczema open day last September. Both my children Daniel and Abigail are under Sandra and we are regular visitors to her.

Both children suffered with eczema from within weeks of birth but it was with Daniel who we had the referral nightmare.

We repeatedly asked our GP for a referral to a dermatologist, but they kept saying to try another moisturiser. The whole team of health visitor said we needed wet wraps and a specialist but they even seemed helpless. I would have to sit holding Daniel through the bars of his cot to stop him from scratching to try and get him into a deep sleep. This resulted in him being in our room for over a year so I could hold him through the bars while I lay in bed too. Relatives questioned why I put photographs in an album when his face looked so bad red and painful. (It was that or no photos)!! He was dry and crusty all over. His Bedding regularly had blood on it from where he rubbed and scratched in his sleep. It was heartbreaking. The strongest steroid the GP would give us was Eumovate. Then one night Daniel cried and scratched through till the early hours of the morning. We called the out of hours GP and were seen at about 3am!! We were given piriton although sheer tiredness and the car journey sent him to sleep. 1st thing on Monday morning we went to the GP and finally the doctor agreed to the referral. We were sent to our local hospital, given Epaderm and Elocon. I was stunned, I had Elocon in the house for a different condition I was suffering. This was the 1st relief to his eczema in over a year. I then started going to the meetings of NSGCCE. What a great forward thinking group prepared to fight eczema and gave me hope.

I went back to our Dermatologist with Daniel one day with bleeding hands and they just said he had eczema and what did I expect???? I cried as I took my suffering baby back to the car, 'he has eczema what do you expect' was not a comment I expected from health professionals who I was turning to for help. I had not touched a drop of alcohol or coffee while pregnant and had exclusively breastfed him, had never risked a baby wipe and carried warm water and cotton wool wherever we went. Yet I had accepted the need for steroid creams and needed help. A hard step for many mums.

Then at a NSGCCE meeting Sandra said there were many different options for us and we should be able to get control which the group all agreed to along with yourself and Colin. I do remember being pregnant and crying on all of you at some point. Sandra suggested I transfer hospital. I went straight to the GP (carefully picking a nice one) and she agreed there and then and it was that simple she sent a letter off and we were soon fighting eczema with Sandra.

We still sink, but we have fight and periods of control. Both children are suffering this week for reasons unknown but I know Sandra is not far away. She is our life line. Daniel was in a constant mess before Sandra, now we have ups and downs but there are ups not just downs as before. I'm a regular in the Talk eczema message board and have said many times from my experience that you must fight for the referral you or your child needs and if not happy then change specialist. If only we could of got to Sandra sooner his first year of life needn't of been so painful. Thankfull for Abigail we had her ready to be referred before she was born!!!

Sorry to go on, hope this is a bit of what you wanted. Eczema has gone nuts here today. Daniel is drugged up on antihistamine and colpol. He said today to cancel his 6th birthday party next week as he so itchy. What is a Mum meant to do? Eczema does not leave the energy to fight health professionals. Thank god for NSGCCE and Sandra’s team. I can truly say that as I have experienced differences in attitude between hospitals in the same NHS system.

Regards Anna x

Webmasters Note: This is again, so similar to what we went through 14 years ago with our eldest daughter! Please, if there is anyone else out there that has had the same / similar referral difficulty. Let me know what it was like for you getting a referral. Good or Bad but honest. You can contact me via the website. Thank you.

The following is the follow-on conversation between Amanda Roberts and Anna Burton. It adds a huge amount to understanding some of the hoops that Anna has to jump through to get through all this.

[Amanda] Lovely to hear from you. I wonder if the change in weather temperature has any bearing on the way the two are at the moment? Whatever the reason, it is good to hear how much more confident you feel. Is Daniel at going to playschool school yet? We want to hear from you whenever you want.

[Anna] Daniel has finished his 1st year at school, he's loving it and can read really well already!! Time flies by. He is 6 on Friday. He is very brave but we do struggle. Abigail is at pre school and loves it. Daniel has a set member of staff who applies his creams every dinner time. He has struggled with his skin through his 1st year but school have learnt with us that some of their activities are not suitable for him. He more often than not wears cotton gloves to school. He used to have spiderman red, then being a good parent I dyed some blue to blend in with school uniform, but I have just dyed the latest lot Ben 10 green!!! Who cares about school colours keeping Daniel comfortable and happy is my priority. Pre school apply Abigails creams if she needs them. I often get a call from school or pre school asking about creams, sun or an activity, I know we are lucky to have this support but it has been through a lot of hard work and pushing for meetings with staff, I actually had 2 meetings in school before Daniel even started as I knew they needed to know what was what from day one. School got right behind me when they saw a terrible flare overnight from an activity, it shocked them and they felt very responsible.

[Amanda] Bet the school felt responsible – shame it took Daniel suffering to demonstrate it to them. It does sound wearing for you though. How do you look after yourself?

[Anna] Yes school only had my word how bad things could get along with photographs I'd taken in to show them. I did not have to say anything to them, he went into school looking like his face was burnt. I'd said enough at home and Daniel repeated it to staff!!!! They approached me with an apology and stepped up his care plan.

I smiled when I read your question about how do I look after myself. I have been the bottom of the list for the last 6 years. Trying to fight up now but I get the time that is left. Many times I have cried with my children, probably wrong but sometimes cannot be helped. Eczema certainly made my return to work low priority for me and husband. Daniel said tonight will his eczema be gone when he is a teenager? No idea where that came from and even if he understands what a teenager is??

[Amanda] Crying is natural and normal – it happens even when you are not struggling against massive odds. And it can be good for us (I expect I read that in Woman’s Own or something!).

Fewer mothers of children with atopic eczema are in outside employment (Arch Dis Cild 1993 69(6) Daud, Garralda and David). More of them feel stressed in relation to their parenting and less efficient in their disciplining. 1993 might sound like a really old piece of research – but I bet it is no different now.

Not everyone “grows out” of their eczema – but a lot do find their eczema improves with age. In fact, just heard from someone today who is hoping that this may be the case with their child after a remission of 5-6 months. Travelling with hope is always a better situation than otherwise.

Posted by Anna Burton : Web Address at 9:12 AM
Edited on: Tuesday, August 31, 2010 10:59 AM
Topic(s): NSGCCE, Posts from Anna, Referral Issues, Stories