This has been a surprisingly difficult post to write.  I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief.  I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

• 24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.

• Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.

• Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.

• Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.

• Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M.  Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward.  The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.

• Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice.  He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH.  In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.

• April-2014: A month passes without much movement on either the complaint or the referral front.  I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint.  During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment.  However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.

• April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint.  He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward.  There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.

• May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation.  I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.

• June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration.  Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him.  The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there.  He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise.  The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times.  The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

It has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it.  We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible.  Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.