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in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made.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.