"Poor follow-up care at the IBD clinic"

About: Manchester Royal Infirmary / Gastroenterology

(as a parent/guardian),

My story is about a complete lack of continuity of care from the IBD service at Manchester Royal Infirmary. My daughter was diagnosed with ulcerative colitis last August (2014) at MRI. The doctors who did the sigmoidoscopy at the time were wonderful. It was explained to us that she would then be seen at follow-up appointments periodically from then on. At the time she seemed to be managing quite well with exercise and diet. However, after Christmas, her symptoms worsened and she developed acute abdominal pain. My daughter lives within 3 miles of the infirmary. She was admitted to A&E at MRI at the end of January. A week later she finally had a further sigmoidoscopy and confirmation of her diagnosis. The ward staff (11/12) were wonderful, especially the consultant, (not her named consultant) who explained the issues, the medication her recommended, and would be prescribing, and how to contact the IBD nurse if she needed support in a developing flare-up. At last we felt that someone had the condition in hand and we were turning a corner.

She was discharged with a prescription for a topical steroid and advised to keep the pre-planned outpatient appointment at the end of March. She soon became used to administering the medication and it seemed to be having the desired effect.

However a few weeks later her symptoms were worsening again. She was looking forward to her clinic appointment at the end of March for advice and a repeat prescription. She then received a letter cancelling her appointment without reason saying it had been rebooked for the end of May. She has tried to call the clinic to say that she needs to be seen sooner than that date but there is nothing but an answer phone and no-one responds. She tried several times to phone her named consultant’s secretary to be put in contact with the IBD nurse. Again, an answerphone and no response. She has been to her GP for a repeat prescription but they have said that she needs to be seen in the clinic.

So now she has worsening symptoms, no medication and no means of getting a repeat prescription in the foreseeable future, nor is there any effective process by which she can arrange for a clinic appointment any sooner than the end of May.

I have been an Allied Health Practitioner in the NHS for 30 years. The care that is available for my daughter with her ulcerative colitis, a miserable condition, is appalling. If anyone out there knows what we can do to make sure she gets reliable follow-up and ongoing care please let us know.

We are aware of PALS and will no doubt use it but in the meantime my daughter needs support and have no idea how to access it.

It’s a sorry state of affairs.

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Response from Manchester University NHS Foundation Trust

Thank you for your feedback. We are very sorry for the delay in responding to your feedback. This is due to us not receiving a notification of your post from the Patient Opinion/NHS Choices website.

We are sorry to read that your daughter found it difficult to contact the Inflammatory Bowel Disease (IBD) Clinic. The IBD Clinic has been through a transition period and a piece of work has taken place for patients to be re-triaged. This has impacted on clinic capacity as the medical team had to go through each patient which was understandably a long process. We now have a new IBD nurse team which has been expanded due to service demand.

We are also sorry that you have been unable to make telephone contact with the Consultants PA. Since your posting, we have asked all the administration team in Gastroenterology to ensure there are alternate telephone numbers on their answering machines in a case a patient is unable to get through. The contact numbers for the IBD team are also now shown on this website http://www.cmft.nhs.uk/royal-infirmary/our-services/manchester-centre-for-gastroenterology-and-hepatology/inflammatory-bowel-disease.

We can assure you that your comments have been shared with the Administration Manager for the Gastroenterology who will share them with the department. She will remind staff to ensure they are regularly monitoring their answering machine messages and that alternate numbers are left.

Update posted by mtoxhcdt (a parent/guardian)

Thankyou for your response. I'm delighted to know that more information is easily available for patients new to IBD. To add to that, it would be reassuring to know that all staff knew how to contact the IBD nurses. We had conflicting information from staff and none of it was correct at that time. So this might be one more loophole to work on.

On a more positive note I have to say that after several dreadful months when my daughter was very ill indeed, by chance she saw a different consultant who was absolutely excellent and he is now in charge of her care. In addition she can now contact the IBD nurses. They are nothing short of magnificent in their care. My daughter is doing well but it is good to know that through regular blood tests and treatment, the nurses keep a close eye on her. It is a great relief and reassurance to my daughter and me that her care is in such excellent hands. Thankyou so much.