Adult congenital heart patients’ services: North West of England

Please can readers forward or share the information below; and most especially the Facebook group and contact number for adult congenital heart patients in the North West of England.

The Children’s Heart Federation is concerned that not all patients are aware of this situation and hope that those groups who are more child, parent and family focused will share as we know that many of our adults stay in touch with the groups that supported them in their youth.

The helpline number for the nurse led service is 0161 276 7959 & the Facebook support group (adult patients only) is:


It’s Grim Up North (West)…

Being a patient rep often sounds like a fun job, you get to spend more time with the clinical teams that support and look after us, help improve services and generally make sure that the patient voice is heard.  For us in the North West that’s been done through the patient reps who were chosen by the regional focus group; principally Anna Burns and Paul Willgoss. We’ve worked closely with the regional congenital heart charity (the Children’s Heart Association) and joined things up between the paediatric network and the adult network management.

And then becoming a patient rep become more intense, and in some ways more important.  There was a focus group meeting around Easter 2017, our only adult surgeon in the area was leaving for a job in London.  We, the patient reps, were told we could only tell people in our closed Facebook group, and that all would be fine, they’d recruit a new surgeon.  This was in the end stages of the consultation on the changes to congenital heart surgery when both the Liverpool and Manchester hospitals were hoping to be commissioned to provide the Level 1 adult congenital heart service.  We needed to be unbiased to both hospitals as we represented patients from across the North West.  Our message was that we didn’t mind where the service was based so long as we ended up with a world class service in our area – soon!

The weeks pressed on and there was no official mention of the lack of a surgeon in the North West – so we did what we had to and wrote to the Chief Executive of the Trust and provided information to others in the focus group so they could do the same.  This approach of asking our group to be involved, to magnify the reach and power of the messages became critical to what we had to do in the coming months.

Anna and Paul were invited to meeting with the management at Manchester (who were the centre of the Network in the NW) and NHS England.  At this point we realised that this wasn’t just about the recruitment of a surgeon being delayed due to an ongoing consultation – the cardiologists we relied on were either on long term absence or about to move, the interventionist was leaving too… Effectively we had no service for a population of just over 7 million and many thousands of GUCHs.

It’s hard to summarise the months of meetings and telephone calls in a paragraph, but we’ve taken the patient voice and made sure it was heard.  We worked with the patient focus group and the Children’s Heart Association to make sure what was meant to happen, actually happened and continues to happen.  We use our social media groups to spread the word and to find out if there are problems with care or information. So, we know that even now not all patients in the NW have been told what’s going on – because not even all the patient reps got the official notification of the issues.  We’ve asked for clear information to be put on the hospitals websites, and keep asking, and will keep asking.  We ensured that travel, and where needed overnight costs, for patients required to travel to Leeds, Newcastle, Birmingham or London were paid for by the NHS – we also raised issues where patients were out of pocket because the paperwork hadn’t been issued.  We’ve helped patients who were stuck in the wrong hospital and helped people with symptoms get appointments. We were open and honest and tried to provide updates that made sense to people.

We also took part in some big events – Paul, & Anne Flear, spoke (and were streamed to the world) at the event organised to try and explain what was going on to the patients.  Anna talked on BBC Radio Manchester (and was much clearer and more informed than the local MP), Paul and another patient were interviewed on Radio 5 Drive Time.  We all went outside of our comfort zone, we all tried to be balanced and fair, and to let the patients in the NW know that someone was fighting, tirelessly, in their corner.

We also used the power of patients and social media – the online petition asking NHS England to make the decision about the configuration of the services earlier than planned gained almost 4000 signatures, the “making your mind up” twitter and mass writing to Jeremy Hunt campaign was noted by many as the sort of gallows humour that us GUCHs specialise in.   We’ve also started training up extra reps, such as Gail, people who know the systems in the NW and know the services – because they use them.

Now the reconfiguration has been decided, our role has changed a little – or rather we have more positive things to do.  Our core role in support patients is always going to be there, but we also get the chance to help build the service that all of us in the NW deserve.

We can’t thank some people enough – Anne Flear and the Children’s Heart Association who supported us through paying for the meetings, room hire and when the reps needed to get together.  Most especially we have to thank the patients, the GUCHs in the NW who have told us how they have been affected and have given us permission to use their stories to show NHS management that our concerns are based on real events. Without your trust, questions and perseverance our job would have been impossible.

Anna Burns (Patient Rep)

Anne Flear (Chair – Children’s Heart Association)

Gail Maguire (Patient Rep)

Paul Willgoss (Patient Rep)

Gift Aid