"Treatment for my adult son with learning disabilities"

Our son had a health check with Jayne LD nurses in GP surgery & health facilitation service where we identified issues, done bloods, got rectal exam done and doctor and learning disability nurse tried to plan an admission. It was so stressful for us all that there was no way to simply be admitted which resulted in me being in a&e from around 10am in Newry to waiting there till middle of night to to sent by ambulance to Craigavon arriving at 2.30am, all could have been avoided if the direct referral to hospital could have been made.

Resulted in A&E only route for admission to daisy hill to see a doctor then referral to Craigavon and they wouldn't let me drive him as deemed emergency. If you look back at my son's treatment he had been seen by a gastro consultant a few years previously with same condition and same blockage which was never followed up until I had the visit with LD nurse.

Community LD team became involved whilst my son was in hospital and enhanced care team to support us both ( Nurse Aisling was brilliant ,I would have been lost without her as I was left in a&e with my son having been given several enema's (which were never going to work) and no bathroom facilities.

I had to ask for a commode. I also needed the LD team to help me with my son getting a tube inserted up his nose , all this being done in a busy a&e. I felt the support from the community learning team was invaluable, I didnt feel alone and I felt supported in a very stressful situation. All this just not necessary if we could have had a planned admission.

Nurse Jayne kept in contact with me and also kept contact with me to keep gp surgery updated) moved to CAH hospital for procedure which LD nurses (Kevin, Julieann and Matthew) supported and came to visit in Craigavon. Due to my sons disabilities I was unable to leave him at all as he was stressed and in unfamiliar place, also in pain with tubes up his nose on a drip etc., so only that the LD team were there gave me a chance to use bathroom or get something to eat.

Also as good as team in ward is they have so many other patients I couldnt rely on them for any time and my son couldnt be left alone. If the LD team had not have been there it would have been a nightmare for me ,as my family are so far from Craigavon hospital and my husband needed to be at home with our other 2 young foster children. I was lucky to get a side room as I needed to stay with my son for entire duration of his stay. Once discharged enhanced care team seen him and then the the community LD team. The LD nurse Jayne also reviewed my son again in GP surgery and we made a plan to prevent admission to hospital again and control bowels.

I would like to add that had Jayne not have taken my concerns about my son onboard the consequences could have been fatal, he was losing weight at only 43kg he wasn't able to eat or absorbed his meditations or speak of what pain he was in, we had been searching for answers for years.

This blockage had been there for years and should have been picked up earlier. I would like to thank Jayne and dr manus for taking my son's case very seriously, for taking the time to phone and check on us even when it he was in hospital . In hospital the care was ok but could have been better , the junior doctors were not the best with my son's disability awareness, and in CAH the 2 separate consultants on his case didn't consult together making my son go through getting a massive amount of laxido solution that wasn't needed or helping, just made him sicker.

In the end the surgeon who preformed the procedure was very kind and the consultant got us sorted in the end. All could have gone smoother my son could have been admitted. I would like to thank all involved in my sons care as he is now doing well. in future I know the learning disability team will be there to help me which is an amazing and very personal service that I feel is needed.

I am a youngish mother of an adult with learning disability I'm fit healthy and would consider myself pretty knowledgeable etc, but I found that I really needed this learning disability team so for other older parents with less knowledge of health systems medications etc it would be invaluable. Another point which was difficult was that in every situation Ii was in , there was no toilet for my son in his room, and every time I had to ask for a commode, he was there to clear his bowels and no one thought a commode or toilet might be a good idea

I had to get the only one available in daisy hill a&e and not let anyone remove it... that's another issue for hospital's, but for patient dignity it should be a basic item available especially if your being pumped full of laxatives and being left especially if the patient needs help with all personal care. If I wasn't there or something happens to me, parents need that service of the learning disability team to step in and provide care.