"Eventually excellent care, but please take LD patients seriously"

Our 18 year old daughter has Down's Syndrome/ADHD/ASD and a Severe Learning Disability. She is non-verbal and finds communication difficult. She has had severe abdominal pain for nearly a year now, which we could not get diagnosed - we brought her into A&E four times. She had some gastric investigations (as an in-patient at the RD&E in 2024) but they didn't show anything significant.

After we identified in the new year that the pain followed her monthly cycle, we were referred to Gynaecology. Finally she underwent a laparoscopy which showed some significant issues which needed immediate surgery. These appeared to stem from a previously infected fallopian tube, which probably happened at least a year ago. She had significant adhesions and inflammation which affected both her bowel and her reproductive organs. She is making a good recovery from the surgery and is a different person.

Some key observations that we are very keen to pass on:

NEGATIVES:

1. At no point did anyone medical consider that this might be a gynaecological matter. Our daughter's learning disability meant that her symptoms were more likely to be dismissed as 'behavioural', when we knew that it was clearly physical. As parents, we had to fight for every referral - I made more than 100 phone calls to the hospital (gastro and gynae departments), GP, 111, 999 (we had the police out twice as she was smashing up the house and attacking people), our social worker and the LD Health team during this time. We want to stress that if a young woman shows up at A&E with abdominal pain, gynae issues should be routinely checked out. It seems pretty astonishing that nobody considered this until we pushed for it.

2. Once it was agreed that our daughter needed a general anaesthetic in order to have a thorough gynae examination, we then had to push that she have a laparoscopy - the consultant (not the one who finally operated on her) initially just wanted her to have an internal ultrasound and get a mirena coil fitted. Without the laparoscopy we would not have been aware of all her problems. I pushed for it because I suspected endometriosis - thank goodness I did (and also that it wasn't endometriosis).

POSITIVES:

3. The Learning Disability specialist health team have been wonderful, supporting us throughout the entire ordeal. They always believed us and helped us advocate for our daughter's referral and the laparoscopy. The hospital nurses supported us when we brought her in (and supported me too), and the community LD team visited us on several occasions. I honestly think that without them we would not have made it through the last few months.

4. Once her gynae surgery date was booked in, everything swung into motion and we were so impressed with how the anaesthetic was planned, and how the procedure went. The anaesthetist, Cathryn, was experienced with LD patients, she was reassuring and took a lot of time to work out with us the best way to get our daughter into theatre and sedated - not an easy task.

5. The surgeon, Jim, was experienced and thorough and explained clearly to us what needed doing. Our daughter needed some complicated procedures and he has clearly 'fixed' her. We are incredibly relieved. She is a different person now - calm, happy. She is making a good recovery.

We are incredibly grateful for the joined-up care that our daughter eventually received, it was truly above and beyond from a top-class team. But more needs to be done about taking LD patients seriously right from the start. We could have been saved months of stress, and our daughter could have been saved months of severe pain.