Tuesday’s public Question Time with NHS England on proposals to close vital heart services at Royal Brompton was hopelessly frustrating, yet reassuring – their argument is definitely flawed, writes Joanna Lewin, Charity Communications Manager

“What provisions are there for people like me, one of the increasing number of adult congenital heart disease (CHD) patients?” asks Emma Collins, who has just had her tenth open heart surgery at the Brompton and has been treated here all her life. From across the room another life-long congenital heart patient comments, “Surely medical staff and patients are the ones who know what is best for them.” Royal Brompton Consultant, Dr Claire Hogg then pipes up, “What considerations are there about dismantling CHD research teams built up over decades?” And from the panel, “Why try to recreate capacity when it is totally unnecessary?” asks Robert Craig, Chief Operating Officer at the Royal Brompton and Harefield Hospitals NHS Foundation Trust.

The queries and comments come thick and fast at my first public Question Time on proposals to close Royal Brompton’s CHD service, with increasing momentum and frustration. A few certainly make the three NHS England panellists sat in front of me, quite frankly, squirm. At times, it’s almost uncomfortable to watch.

They are Will Huxter, Regional Director of Specialist Commissioning, Professor Huon Gray, National Clinical Director for Heart Disease, and Dr Peter Wilson, Paediatric Intensive Care Consultant and Clinical Co-Chair of NHS England’s Women and Children Programme of Care. Representing the Trust, we have Robert Craig, Dr Lorna Swan, Consultant Cardiologist, and Dr Margarita Burmester, Consultant Paediatric Intensivist.

The debate naturally falls into three or so distinct issues, the first of these being standards. NHS England today say that on-site co-location is best – or, in layman’s terms, having specialists all on one site, so that if a child with a congenital heart disease needs a gastroenterologist urgently, for example, one can be at their bedside by catching a lift from the floor above. The official standard actually dictates that the required specialist must be at the bedside within 30 minutes. Whether that time is beaten by walking through several wards to wait for a busy lift or whipping round the corner on a bike, the standard does not prejudice.

How do I assure the parents of my respiratory patients about where they will go?

Half an hour is a time frame adequately met by the Brompton with time to spare, due to its proximity to Chelsea & Westminster Hospital with which it has a highly effective working relationship – a fact accepted by the three panellists. With that being a given a tick box filled repeatedly they are asked for the evidence that proves on-site, rather than off-site-but-sufficiently-close to meet the official standard, is preferential. Repeatedly, the inquisitive audience is left wanting. In the silence, Robert Craig adds: “It’s not even all about how quickly a consultant can be at the bedside, it’s the fact that the consultants are a team, who work together.”

Transition is the next consideration in this debate – and by now it’s most certainly a debate. That is, the transition from childhood care to adult care. We are assured by Jackie, a lifelong Brompton patient now in her 60s, that the smooth transition during those delicate teenage years is crucial. The Brompton can provide just that – its children’s CHD service is in the same building as its adult CHD service. Teenagers aren’t confronted with having to move to a completely new hospital to continue their long-term care. Dr Lorna Swan, who works with adults with congenital heart conditions, links this point back to the co-location issue. “1% of patients need emergency review from the services NHS England now require to be co-located. 90% of patients on the brink of adulthood need that smooth transition,” she says.

The knock-on effect of the closure of the CHD service was next on the slightly derailed agenda. The paediatric intensive care unit (PICU) at the Brompton shares the chopping block, as without CHD patients it would no longer be viable. Without PICU, there can be no child respiratory service either. It’s a slippery slope.

Dr Ian Balfour-Lynn, Paediatric Respiratory Medicine Consultant and Co-Director of Children’s Services, asks, “How do I assure the parents of my respiratory patients about where they will go?” He maintains, although the panellists do not say it themselves, that NHS England consider respiratory as ‘outside the remit’ of this consultation, which focuses on congenital heart conditions only. The panellists seem remiss for an answer, but remind us that this is a consultation and that therefore it is our duty to include this valid concern in the formal response.

Where is this imaginary capacity for all those currently treated at the Brompton?

Capacity looms large over the conversation in a final stage of discussion, which prompts many personal stories from parents of children who had been told prior to coming to the Brompton that “nowhere else in the country can take you”. One mother asks calmly but firmly, “Where is this imaginary capacity for all those currently treated at the Brompton?” With special attention to PICU, the NHS England panellists explain that there will be capacity elsewhere for the few (they estimate) that will be required. Margerita Burmester seems surprised and promptly reminds the room that there is an important distinction between general PICU and Royal Brompton’s PICU, which is exclusively for the care of children with cardio-respiratory conditions.

Question Time has been a journey for me. Hearing directly and emphatically from a number of groups who will be de-stabilised at best should these plans go ahead is a stirring and maddening experience. It’s clear that formally responding to the consultation is the key here. But it’s hard to verbalise the whys because it is simply irrational to close a service that’s in such good nick – to break a beating heart.

As Bob Bell, Chief Executive of the Trust, asks in a sombre tone at the end of the evening, “Why is closure the best option? Resolving issues is surely better.” And if it is all down to the co-location standard that the Brompton meets but not to the imagined degree postulated by a small group of NHS England bosses, then I’ll leave you with this question asked by Jim Hedges, father of a Brompton CHD patient: “You are terrifying all these parents and destabilising all these clinicians because of a perceived lack of on-site conjoined services, which you say, and I quote, ‘does not have robust evidence’ to prove it is any better.

“With the NHS in the state that it is in, is there nothing better you could be doing than closing a service that works so well for so many?”

 Join our march against these plans on 18 March. We'll gather at 10.30 at Dovehouse Green. To register, click here.