As promised here are the comments and answers that were discussed by the NHS England Review team meeting last Friday

An NHS Panel took questions about the possible forthcoming changes to the provision of congenital heart disease in England.

• Jonathan Fielden – Director of Specialist Commissioning
• Will Huxter – Regional Director for Specialist Commissioning and SRO for Congenital Heart Disease Programme
• Michael Wilson – Programme Director Congenital Heart Disease Programme

Representatives of the hospitals and patient groups as well as commissioners all had an opportunity to ask questions.

Standards Implementation

The NHS England team set out the process that is now being undertaken following their announcement about the Standards review in all hospitals.

The NHS England team set out the process that is now being undertaken.

Having published the suggestions that NHS England are minded to follow – https://www.england.nhs.uk/2016/07/will-huxter-13/

Pre consultation, which we are already within.

The NHS England team will be seeking the views of service providers, local and national service users and funders, health boards. More information on how to make your voice heard will be published soon.

Consultation.

Will be a formalised process seeking opinions about the best way to meet the Standards with regard to the proposal set out.

The proposal is that change will start in April of 2017 but that does not necessarily mean change for patients at that time. It will be more of a commissioning and planning time. The plan for the following year will need to have been broadly formulated by September 2016 and will look at capacity, effects on other areas of care, recognition of complexity. It will be viewed as a national service.

It is important to note that a number of services will be reviewed in the next 9 months including PICU provision and Paediatric Surgery as a whole.

It is essential that all of these reviews work to plan outcomes together as it is essential to have a joined up collocated service.

Concerns raised by LHM members, and non-members seeking information, since the announcement of changes to the services.

• Understand the need for Standards but do not understand the minimum numbers of operations or the co-location.

To gain a greater understanding of the Standards follow this link to see them in detail. https://www.england.nhs.uk/commissioning/spec-services/npc-crg/chd/

• Lots of concern that remaining units will have to expand their services to accommodate more patients but will not be funded or supported to take the added load and that that will affect care.

It was made clear that the funding (tariff) for each patient would travel with them to any unit taking on any treatment. This means that the staffing and facilities will gradually build to take on new patients and most of the bigger units have that in their expansion plans. However it was made very clear that there is no extra funding available to make major changes in preparation for change.

• Fear that knowledge about “my child’s care” will be lost in the changes. Parents are asking to transfer all of their care so that there is continuity between planning and surgery.The NHS England team asked that medical teams be professional in reassuring their patients that they would be cared for properly.

Any changes finally agreed will not happen in haste and medical teams will be responsible for ensuring good continuity of care and professional handing over of services.

• Travel for surgery, not worried about the need to travel if treatment will be expert but are worried about the practicalities and cost.

NHS England say this will form part of the consultation and make up part of the planning and implementation of the future service.

• Who will look after the children closer to home? Confusion about local ongoing cardiac care, not sure they want it.

Currently there are no plans to stop cardiology services local to patient’s homes, where they are already set in place. A big part of the implementation plan will be to look at the networks of local services and strengthen the medical care and community knowledge about how to support and care for children and adults with congenital heart conditions. This will include district general hospital care, outreach clinics and community team education.

• An early plan for implementation. Not knowing what will happen has frightened families.

Implementation meetings have begun. Not with individual units but collective team and user meetings that look at a variety of aspects of care and treatment as well as the mechanisms behind them. More formal local implementation meetings will begin once the final service plan decisions have been made.

• Worries that the fact that Wales does not have any Standards will affect care between operations and in life beyond especially as they travel into England to undergo interventional treatment.

The NHS England team have been linking with NHS Wales and there is agreement to confirm that 2 of the 3 planned Sets of Standards have been agreed. Antenatal services, waiting times. The other set of England Standards are still in debate. SH has offered LHM (with other charities) to support clinical teams work to agree the Standards.

• Who can parents go to to contribute a national voice if they are not LHM members?

NHS England will be setting up Portals and meetings with patients and families throughout the pre consultation and consultation period. LHM will advertise these once they know where and when they will take place.

ECHO asked that children and teenagers be included more in the implementation and consultation process. All disseminated information is currently for adults.

The hospitals potentially affected by change expressed their worry that patients might think their service is currently not safe especially as their mortality rates are low. NHS England stressed that this was not about the current provision but about how teams could build to the newly agreed standards of care in the future.

SH made a comment that although survival was of course essential that families frequently wanted to know about longer term outcomes. Some of the new Standards should help clinical teams look further into the long term quality of life for a child.

Medical teams stressed the importance of investing in the service and working to retain staff. The NHS England team agreed that both were essential but that the work would have to be cost neutral because the NHS as a whole would not have any further funding to offer.