You may remember that back in December, M was referred on an urgent referral to our local hospital based on the advice of GOSH. He was suffering from chronic constipation, was in considerable pain and was losing weight as his appetite decreased. Sadly, our local hospital felt it was unable to admit or treat M and instead our only option was to treat him at home, using a strong laxative and bucket-loads of patience as he struggled to recover his health. Our urgent referral resulted in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made. We thought long and hard about whether we wanted to take up this appointment or not, given our previous experience with our local hospital, but we knew that local input could make a big difference to all our lives and felt that this could be our way into the local system.
February’s appointment arrived quicker than we could have imagined and we went along with an attitude of “hoping for the best, but expecting the worst”. The symptoms that M was suffering back before Christmas have disappeared and we have had the challenge of changing his diet and his medicines again in an attempt to reach a status quo with the EGID. What we hoped for was a local doctor who would listen to our concerns and who would offer us the helping hand we so desperately need. We wanted a local doctor who could point us in the right direction at the hospital and would support our search for shared care between our local hospital and GOSH for M.
Instead we got a doctor who, through their less-than-professional manner, vocal criticisms of both our GP and GOSH and obvious impatience, left us feeling let down once again. They belittled our decision to seek a second opinion when the local hospital had let us down 3 years ago and were unimpressed that we had our own point of view concerning the care given to M. They reluctantly agreed to refer us on to the gastro team at the hospital, but made it clear that they believed it highly unlikely any of the gastro consultants would willingly take M on a shared care basis with GOSH. Mike and I weren’t surprised, but we were disappointed that this consultant chose to make their opinions known so clearly in front of our impressionable and sensitive 7 year old.
Needless to say, we are not letting things drop there. We have written a letter of complaint to our local hospital and are now waiting for their response to our concerns. I am writing to our MP to make him aware of how badly M is being let down health-wise locally, to see if he will get involved on our behalf. We will persist with the onward referral to one of the gastro consultants because we remain strong in our belief that shared care between our local hospital and GOSH is something M needs; AND we will continue to fight M’s corner to make sure that he is put first and gets the support he needs.
7 years to diagnosis 
That is appalling. So sorry to hear that. We have been treated badly but Zac’s condition is not half as severe as your little boy. How can they be so cold and uncaring? I used to think people to go into this profession because they have a true vocation, a real calling to care. Clearly not. Don’t give up hope. I know you will keep fighting. It is terrible that you have to fight so hard but it seems to be the only way. I would definitely write to your MP and take it as far as it needs to go. Try and shame them out. I got our story in the local and national press – it helped that my MP is Nadine Dorries and utterly hopeless. It did seem to help because we got our appointment in the end. Good luck gave us a new doctor. The other one who is useless is on maternity leave but the new one is great. Sending you much love and best wishes.
Thank you so much for your comment. I’m waiting to hear on the complaints letter – supposed to get a reply/acknowledgement within 3 working days, 7 working days later we’re still waiting. Am about to bombard our MP, and am thinking of going to see him in his local surgery too, so will let everyone know how it goes. Rx
Argh.. I am sorry to hear this. Keep writing your letters and find out who oversees all the hospitals to see if you can escalate to the next level. *hugs*
Thanks lovely – much G&T needed to accompany the hugs 😉
It sounds like we’re in a very similar position. Our 6 /12 yr old son has been bleeding rectally on & off since Sept 13, his consultant at a local hospital did an endoscopy & found that he has dozens of ulcers, he prescribed 6 wks of antacids & told us to come back in 6 mths. DS continued bleeding, has severe stomach aches (he has said he would like to die because of the pain a few times – he asked if I would buy him a grave as he would rather die as it hurts so much), vomiting most days, rectal prolapse etc. My partner & I kept chasing his consultant asking for an appt sooner than 6 mths, but he totally ignored us for about 4 wks. I then started asking for a referral to GOSH, & it was only when I threatened to make a formal complaint via PALS that the consultant made the referral. The GOSH consultant has been trying to obtain confirmation that the local consultant would offer shared care for about 2 wks. Only today has the local consultant said he has discharged DS & doesn’t do shared care with GOSH, & that we should get an appt with a general paediatrician to cover shared care – I’m waiting for the GOSH consultant to confirm if he/GOSH would accept this. I’m at my wits end, I can’t believe the kind of care DS is (not) being given. DS tried to strangle himself 3 times in March. He’s seeing an ed psych who said that he’s very anxious, stressed, & angry & that he’s worried that he’s going to die because of his stomach problems. I would be really grateful if you would let me know how you get on, & I will let you know if I find out anything that could be helpful to you.
I am so, so sorry to hear of your dreadful experience with your local hospital. We have taken our case to our local MP, who has been fantastic and is on board with fighting our cause in getting M the care he needs.
I did make a formal complaint via PALS and have had a reply, which now sees us having an appointment with one of the gastro consultants at our local hospital and have a member of the management team attend too, to make sure that M gets the care he deserves. I don’t quite know what the outcome of that will be, but do feel it’s a step in the right direction. I know GOSH prefer to share care with a general paediatrican so that there’s no disagreement about how M is treated for his EGID, but our local hospital wants him to be looked after by a specialist and not a general paedistrician.
I would recommend you make a formal complaint about the way your son is being treated and contact your MP to get help if you find you need it. Do shout if there’s anything more I can do to help and please keep me informed of how things progress. Thinking of you, your son and the rest of your family. xxx
Thanks very much for getting back to me & for advice & support!
On Friday I asked R’s GP to refer him to a general paediatrician at another local hospital that refers a lot of patients to GOSH. I haven’t heard back form them yet so don’t know if there will be any issues. At this stage, for various reasons, we don’t have faith in the local gastro consultant, so maybe this is a blessing in disguise. Regardless, the local consultant & the one at GOSH are friends, & I was concerned that complaining would annoy the GOSH consultant.
Have you thought about asking M’s GP to refer you to a general paediatrician at another local hospital for a second opinion, one that refers a lot of patients to GOSH? I really hope you achieve the outcome you want & need for M from this meeting. It’s ridiculous that bureaucracy should stand in the way of sick children getting the care that they need.
Thinking of you all too
XXX
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