Leeds regional inherited cardiovascular conditions service

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Leeds regional inherited cardiovascular conditions service
This page will give you an idea of the changes involved in coming to the Adult Inherited Cardiovascular Conditions Clinic.

As you are now over 16 years of age, the adult service is better equipped to give you and your family the right care, treatment and support.

You may have been attending the children’s cardiology clinics at your local hospital or in Leeds for some time, so changing to the adult service may feel different and a little daunting. We hope that by providing you with this information we can encourage you to continue to attend your appointments and feel supported by the adult team. Please remember that if you have an inherited cardiac condition, regular follow up in this clinic is really important.

As you become an adult, your healthcare and lifestyle needs will change. Issues to consider may be; higher education and careers, insurance and family planning. There will be opportunities to discuss these issues in clinic as well as having on-going support from the nurse specialists working with the adult team.

Transitioning from childrens services to adult services

Becoming an adult means taking responsibility for your own health. You will be involved in all of the decisions regarding your condition. We hope you will feel supported by the team and an important part of this is building a relationship with us. Building this relationship will start with meeting the ICC nurse specialists, this may be at your last appointment with your paediatric consultant. You will then have a telephone appointment with the nurse specialist approximately 1 month before your first appointment in the adult service; you will receive a letter notifying you of the date and time for this telephone call. This is a good opportunity to ask any questions you may have about your first appointment with the adult team, it also allows the nurse specialist time to get to know you outside of the clinic environment.

People you may see in the clinic

Consultant Cardiologists
Consultant Geneticist
Nurse Specialists
Sonographers, who will do your heart scan
Genetics Counsellor
Counsellor

Where is the clinic held?

The clinic takes place in Outpatients, on E floor of the Jubilee Building at Leeds General Infirmary. A map will be sent with your first appointment.

Your first clinic appointment

During your first appointment with the adult team the doctors may want to repeat some of the tests that you have previously had, this is to ensure that they have up to date information in relation to your heart condition. These usually take place on the day, before you see the doctor. The doctors may also re-visit past medical history, request information about your medications and ask about how you are feeling at the moment.

Inherited cardiac conditions may involve more than one member of the family, so it may be helpful to obtain information about this prior to your appointment.

One of the nurse specialists; who you will have already spoken to over the phone, will be present to support you in clinic. You may like to write down any questions you want to ask in clinic (it is easy to forget them) as well as any medicines you are taking.

Your adult cardiologist will know all about your condition and the care you have had. All important information will be sent to your new cardiologist before your appointment. He/she will continue to work closely with consultants within Children’s Services.

Frequently asked questions

No you don’t, but it is important to know you can whenever you feel ready to do so. The doctor will be happy to see you on your own or with your family or a friend. This is your choice. Many people wish to continue to attend with their family at least for the first few years, but others like to come on their own.

That’s fine. Whatever you say to the doctors is strictly confidential and will not be passed on to your parents or carers without your permission.

Meet the team

Meet individuals who all work closely together to try and provide the very best service that we can. This multidisciplinary approach is one of the strengths of our service and allows all patients, young or old, to see the appropriate person with the most expertise in your condition.

Consultant cardiologists

Dr Stephen Page (Arrhythmia and heart muscle)

Dr Alex Simms (Arrhythmia and heart muscle)

Dr Anshu Sengupta (Arrhythmia and heart muscle)

Dr Wazir Baig (Aortopathy)

The Yorkshire Heart Centre
Jubilee Building,
Leeds General Infirmary
Great George Street
Leeds LS1 3EX

www.yorksandhumberhearts.nhs.uk

Tel Sect: 0113 392 6619

Dr E Brown (Consultant Paediatric Cardiologist)
Tel Sect: 0113 392 5738

Dr G Delle Donne (Consultant Paediatric Cardiologist)

Dr R Jewell (Consultant Geneticist)

Dr K Prescott (Consultant Geneticist)

Verity Hartill (Consultant Geneticist)

Dept Clinical Genetics, Level 3
Chapel Allerton Hospital
Leeds LS7 4SA

Tel Sect: 0113 392 4563

Kathryn Moore, Emma O’Malley
Genetic Counsellor
Tel: 0113 392 4436, 0113 392 4463
and 0778 900 3997
[email protected]

Gemma Bassindale (Specialist Cardiac Physiologist)

Kath Ashcroft
0778 900 3997
ICC Co-ordinator,
Genetic counsellor
Tel: 0113 392 4436
Sect: 0113 392 4456
E-mail: [email protected]

Point of contact for clinical questions

Annabel Nixon, Rachel Walker
ICC Nurse Specialists,
Tel: 0758 418 4602
[email protected]

Note: for questions relating to the scheduling of your appointment please use the contact number for the administration team found on your appointment letter.

Yorkshire Regional Genetic Service, Chapel Allerton Hospital
Yorkshire Heart Centre, Leeds General Infirmary