Congenital Heart Disease Services
We are changing the way care is delivered across the North West of England, North Wales and Isle of Man for people living with congenital heart disease.
Please read below to see how this may affect you.
Why is it changing?
In 2017, NHS England reviewed congenital heart disease (CHD) services. Significant changes have been made to how and where care is delivered in the North West England, North Wales and The Isle of Man for patients with ACHD to ensure that no matter where you live you can expect to receive high quality ACHD services delivered as close to home as possible.
What does the new Congenital Heart Disease (CHD) Service look like?
NHS England is responsible for ensuring a high-quality ‘all-age’ service is delivered to everyone with congenital heart disease. All hospitals delivering care for patients with CHD are working together as a Network to deliver this service. Care is delivered across three levels described below:
Level 3 ACHD outpatient services
Outreach clinics for adult patients are held at Blackpool Victoria Hospital and Wrexham Maelor Hospital and continue as normal and means that you can be reviewed locally by the specialist ACHD team and most investigations performed locally.
What will happen if I need to be admitted to hospital?
If you need to be admitted to hospital for treatment, your care will be coordinated by the North West team of ACHD cardiologists and specialist nurses. You may be able to be treated locally with advice from the team. Patients who require an operation or an interventional procedure or have more complex treatment needs will be transferred to Liverpool.
If you are admitted to another hospital in the region, not mentioned above, the health care team looking after you should seek advice from the ACHD team. There is an ACHD consultant on call and they can be contacted by medical professionals via the switchboard at Liverpool Heart and Chest Hospital (0151 600 1616). Alternatively for non-urgent queries, they can call the ACHD Advice line (8am-6pm) on 0151 254 3333.
I need an operation or procedure as an adult – where will this be done?
Surgery and interventional procedures for adults with congenital heart disease are all performed at Liverpool Heart and Chest Hospital.
I am about to transfer my care to adults – what does this mean for me?
You will be supported through this time by a transition nurse based at the children’s hospital and may be invited to a young person’s clinic in the Children’s hospital. You will be offered help and support to learn all about your condition during this time. You will have the opportunity to meet members of the ACHD team and visit the centre that you have been referred to. We aim to provide support to all young people until they have settled into adult care. Most people have transferred their care by 18yrs of age.
Where will my outpatient appointment be?
Regular outpatient clinics for adult patients are held at Liverpool Heart and Chest Hospital, Manchester Royal Infirmary, Blackpool Victoria Hospital and Wrexham Maelor Hospital. Due to changes in the service over the last few years, we know that there are patients who are overdue for their appointments. We are working hard to get these patients seen as quickly as possible.
Who will look after me?
Irrespective of where you live or where you are seen as an outpatient, you will be cared for by the same ACHD team. This means that you will be seen by an ACHD specialist as close to home as possible.
How will the maternity services be provided?
Joint obstetric-cardiology maternity services have remained unchanged. There are obstetric-cardiology services based at St Mary’s Hospital alongside Manchester Royal Infirmary and Liverpool Women’s Hospital. Most pregnant ACHD patients within the North West region have planned deliveries at St Mary’s in Manchester. The North West obstetric cardiology team will decide on where a woman should deliver based on a multidisciplinary specialist clinical assessment. The team will always discuss with expectant mums the reasons for clinical decisions and recommendations.
How will the pulmonary hypertension service be provided?
Your care will remain largely unchanged. Your outpatient appointment will be at Manchester Royal Infirmary as normal. You will also continue to receive your medication in the same way from either Lloyds Pharmacy at Manchester Royal Infirmary or via healthcare@home services from Sheffield. If you routinely send your monthly blood sample to the team at Manchester this will also continue as normal. If you become unwell and require an inpatient stay, you may need to be transferred to Liverpool for inpatient care.
Can I still claim travel costs?
The numbers of patients this applies to is now very small and in time will no longer be required. The ACHD service started performing surgical and interventional procedures in October 2018. Whilst it continues to mature, there may be cases where the team recommends referral to another ACHD centre outside of the region for your procedure or operation. You may be able to claim back any extra reasonable costs that you incur as a result. Each individual case will be assessed on a case by case basis. If you meet the criteria for claiming back your costs you will receive a ‘travel pack’ with details of how to make a claim. Liverpool Heart and Chest Hospital will be responsible for these claims. The ACHD specialist nursing team will be available to discuss these arrangements on an individual basis. This does not affect anyone who receives help under the National Healthcare Travel Costs Scheme.
Help and advice
We appreciate that you may have individual concerns and questions about your care and how this is going to be delivered. We would encourage everyone to call the North West ACHD advice line on 0151 254 3333 if you have any questions about how this affects you directly or if you are worried about your health. If you become acutely unwell you should seek medical help by seeing your GP, calling 111, or in an emergency, attend your local A+E.