Over the last twenty years the care and treatment of children and adults with congenital heart disease has been repeatedly discussed, reviewed and assessed. This relentless scrutiny, with no confirmed forward plan, has left the service underfunded and lacking the energy needed for the ambition that will allow for growth or the advancement of treatment or care.

Now there is an urgent need for stability in the care available for every child and adult needing treatment.

The agreed Standards of Care, 2015, for congenital and children’s heart disease set the benchmark for the gold standard service promised for every child and adult in the country. Every unit has now been measured against them. Today NHS England has confirmed that some changes are needed because not all of the units currently offering surgery and  interventional treatment are able to meet the new Standards as we move forward.

NHS England’s decisions:

Manchester and the North West – surgical services for adults with congenital heart disease will transfer to the Liverpool Heart and Chest. Currently patients have to travel to centres outside their region as there is no longer a surgical service in Manchester. NHS England hope that Manchester will continue to offer a Level 2 ( a unit that offers cardiology but not  surgical or interventional treatment) service for both children and adults and that they will continue to offer cardiac patients specialised maternity care.

Glenfield, Leicester – The Glenfield team have presented a plan to move their children’s cardiac services into the Children Hospital based at the Leicester Royal Infirmary, this will allow them to meet the co-location of children’s services Standard. The Glenfield team will also work to encourage more referrals from district hospitals to ensure that they can meet the minimum number of operations that each surgeon will need to do each year. The NHS England Board agreed the plan and will put monitoring in place to ensure that they meet the timeframes set out for completion.

The Royal Brompton, London – During consultation the Brompton team presented a plan to meet the Standards by gradually merging their service with the Guys and St Thomas’s hospitals. Co-location will be met as children will be treated in an expanded hospital at the Evelina. Ultimately they would like to build a super centre of joined up congenital cardiac care, acquired heart disease, respiratory services and research on the Guys and St Thomas’s site. The NHS England Board agreed their plan for a combined service. These plans will be monitored by NHS England to ensure that they meet the timeframes set out for completion.

The Freeman, Newcastle – Although the Freeman team are unable to meet either the     co-location or surgical number Standards no change to their service will be made at present because they provide  advanced heart failure and transplant services that are not available in other units (GOS is the only other children’s heart transplant unit in the UK). The Board will review the Freeman cardiac and transplant services over the next few years.

Some Little Hearts Matter members have been worried about changes that affect their cardiac unit. The respect and trust they have for their existing medical team made them fearful that no one else could offer them a better service. Todays NHS decision should give families confidence that once changes have been made all of the units will be able to meet the Standards in the near future. Their medical team will remain the same even though they may offer their treatment from a new base.

NHS England is assuring patients that nothing will happen quickly. Operations and interventions planned over the next few months will still go ahead at their normal unit. Outpatient visits and outreach clinics will continue as planned as all the cardiac units will retain their ability to offer non-surgical care. Medical teams will write to patients and families if they think that there will be any change to previously discussed treatment pathways.

Little Hearts Matter’s view of the changes proposed

Every Little Hearts Matter member relies on receiving the very best care that the country can offer because children and young adults with a single ventricle heart must have the highly skilled treatment to allow them any chance of living a good quality of life.

The new Standards of Care will ensure that every child has access to the best care available. The charity has been pushing for Standards for many, many years because it is the only way to reduce the risk of regional differences in treatment and outcome, survival is not the only measurement of success, many children with complex conditions have other outcome risks.

The LHM team advocate that children should be treated in child-centred hospitals where they will have access to more than just cardiac care. Very few children with a single ventricle heart condition have only one challenge in their life. They need multidisciplinary care available by their bedside. We are delighted that all of the units have agreed that this Standard is essential and have created plans to look after children in child centred units.

The charity also agrees that the Standard, created by surgeons, that sets the minimum number of operations from each surgeon, each year, is essential to ensuring that surgical skill levels and skill mix can be maintained, a view agreed by the doctors presenting to the Board of NHS England today. Children with single ventricle heart conditions rely on the sort of expertise that comes from the repeated experience of treating a variety of complex conditions.

However, whilst advocating for the Standards, and acknowledging that change will be needed to achieve them, the charity is determined  that the patient must be seen as the most  important person through this change and that there must be no risk to their treatment or care.

Throughout the formation of the Standards, and through the drawn out congenital cardiac review, Little Hearts Matter representatives have repeatedly raised the need for an organised transition and implementation. The charity will continue to use their position within arenas for change to raise concerns about patient care and the needs of families travelling the cardiac journey with their children.