To whom it may concern

Dear Local Hospital

28 years ago, your specialists saved my life.

My family and I owe our gratitude to those skilled doctors who were on duty the night of my 9th birthday, when I was admitted perilously ill and closer to not making it through the night than my parents could have imagined.  Their wonderful care brought me back from the brink as my Type 1 diabetes was diagnosed and they supported me for the next 11 years of my life.  It is not ridiculous for me to say that I owe my life to you and had every confidence that when Mike and I started a family of our own, we could entrust the health of our children to your care.

2 and a half years ago, your consultants told me that there was nothing wrong with my son, other than a minor complaint he would grow out of in time.  Your doctors left me questioning my instincts and made me feel that they viewed me as a neurotic mother.  They even queried why we, as loving parents, would consider putting our child through an experience as horrendous as an endoscopy, when it was obviously not needed.  Mike and I began to doubt our judgement and, at breaking point and in desperation, we took our child and walked away from your care.

Our wonderfully sympathetic GP listened and sent us to one of the top Children’s Hospitals in the world for a second opinion. At our very first appointment there, we were told that he was a very ill little boy, but that they could help.  They have diagnosed a chronic condition that he will probably never outgrow, a condition that has changed his life.  For 2 years, we have juggled our family’s lives to make the regular and necessary trips to London to search for answers and to work out how to return our son to better health.

Six months ago, our son was struggling with new symptoms and GOSH requested a test to rule out any infections in his system.  A simple test that, due to its nature, needed to be carried out locally and our GP readily agreed and sent off the sample with the appropriate paperwork.  Within days, you replied that you wouldn’t do the test due to funding and suggested that if GOSH wanted the test done, then we should travel to London for them to carry it out.  It was with a sinking heart that I accepted this decision and vowed silently that I would never willingly bother your hospital again.

Five months ago, he needed urgent abdominal x-rays and I reluctantly agreed to attempt a referral to your hospital for these.  To my surprise, you agreed and once again I was reminded of the competence and compassion of the dedicated people who work there as they cheerfully showed my inquisitive child the x-rays of his poorly tummy.  A tiny seed of hope began to sprout – maybe we could develop a relationship with you that would put my son first.

Two months ago, we were prepared to give you another go.  GOSH wanted him to be admitted to you for the extensive bowel prep he needed prior to his scopes, due to the chronic constipation that had been identified over the summer.  I was willing to see if things had improved, now that we had the “big guns” at GOSH involved. You let us down again.  I don’t know fully the conversation that happened between your gastro team and the team at GOSH, but you refused to admit him and instead we had to face the upheaval of a week away from home to make sure he got the care he needed.  That tiny seed of hope had obviously been trampled on thorny ground.

A couple of weeks ago, I noted anxiously that he was showing some signs of chronic constipation once again and our best efforts were woefully ineffective.  GOSH advised that he needed to be admitted before Christmas for another bout of heavy duty bowel preparation to clear his system and once again suggested we tried you.  Once again, our stalwart GP sent an urgent referral across to you and once again, you refused to take him. This time you insisted that you wouldn’t even consider a referral sanctioned by GOSH unless he was examined by a GP first, so we did as asked, got him examined and re-sent the referral.

We are now nearly 3 weeks on and the best you can offer is an initial assessment in February 2014.  If this is your response to an urgent referral, I dread to think how long a child might need to wait for a so-called non-urgent one.  Our GP has been fantastic and can’t do enough to support us.  Their admin staff are searching high and low for any possible alternatives for us and making phone-calls that are definitely above and beyond their call of duty.

You have been fantastically dreadful and are refusing to budge on your decision.

I understand that you are busy.  I understand that your beds are full of other sick children.  I understand that you feel you don’t know my child any more and are reluctant to offer him treatment based on the recommendation of other health professionals.

BUT, you are failing a 7 year old child.

A child who is in constant pain that waxes and wanes to an increasing level every day.  A child who wakes in the night crying because of the pain in his tummy.  A child who needs medical intervention now, so that the problems don’t multiply and escalate in the lead up to Christmas.  A child who is at emotional breaking point and desperately needs some help.  A child who doesn’t understand why I can’t make him better and why you won’t help.

GOSH is helping as best they can and is working alongside our GP to prescribe a series of stronger laxatives for us to use safely at home.  The problem is that we won’t know for sure whether they’ve worked or not and will just have to keep trying during the festive season. What’s more we’re back at GOSH in the New Year, the best part of 6 weeks before you’ll see him and I’m left wondering what to do for best.

We’ve been told that we need a local paediatrician to be involved in his care.  Someone we can liaise with when things get this bad and who can help us get the local care that our child needs.  I’m caught between a rock and a hard place.  I don’t trust that you will give him that help and support and yet we can’t be dependent on continual telephone consultations, especially when we know local input would be less of a strain on us all.  Frustratingly, I don’t have options.  I know just how excellent you can be and yet the last few years have been one disappointment after another. The best alternative to you is in Wales and we can’t get there because of NHS funding policies.  We’re caught in a political trap, where everything comes down to money, or the lack of it, and postcodes; and everyone loses sight of the most important thing:

That at the centre of it all there’s a 7 year old boy who just needs someone to help him feel better.

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16 thoughts on “To whom it may concern

  1. mumannie123

    R – you should copy this to you MP and then ask to see him. This has to stop. We’re now seeing another excellent consultant not too far away from you. I can give you his name and maybe they can take on his care? Your boy does need a local paediatrician. I’m with you every step of the way. You will win, it’s just a mammoth battle. x

    Reply
  2. MotherGeek

    I have only just discovered your blog via the britmums special needs roundup. Firstly, I want to send huge hugs. Secondly, I agree with earlier commenters – send this letter (and link) to the hospital in question, your MP and your local newspaper. Also, remind them of the NICE guidelines. They aren’t allowed to refuse you, which I guess is why they’ve given you such a ridiculous wait until your sons appointment. I am crossing everything they make a U turn very soon. Maybe tweet this link & @ reply in the hospital or PCT if they have a twitter account, plus your local MP and newspaper? A Social Media storm might just clear a path for your son xx

    Reply
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  4. downssideup

    I’m so sorry that you are not getting the support and help your son needs. Sadly this is nott he first case like this I have heard of. I’m sure with some loud shouting, as others have suggested, a path will clear for you. That should not need to be necessary though. H

    Reply
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