The Leeds Teaching Hospitals NHS Trust

Haematological conditions: Sickle Cell Anaemia, Thalassaemia and Haemophilia

Welcome to Psychology Service for Sickle Cell Disease, Thalassaemia and Haemophilia.

Dr Adrienne Renfrew, Principal Clinical Psychologist, provides a dedicated service to patients referred by Leeds Teaching Hospitals NHS Trust Sickle Cell and Thalassaemia, and Haemophilia Teams. The Multi-Speciality Psychology Service provides support to individuals with other Haematological conditions.

The Psychology Service can see people in face-to-face and virtual (telephone and video) appointments. All face-to-face appointments will be at St James’s University Hospital.

Your appointment letter will tell you exactly where your appointment will be held.

Why is there a Clinical Psychologist working as part of the Sickle Cell, Thalassaemia and Haemophilia teams?

We know that coping with an inherited condition like Sickle Cell Disease, Thalassaemia or Haemophilia, in addition to the usual stresses in life, can be especially challenging and that sessions with a psychologist can be helpful in getting through a difficult period.

Clinical Psychologists have been trained in a wide range of talking therapies that can help people to cope with the physical and emotional impact of illness. For this reason, Clinical Psychologists are a key member of many hospital care teams. Seeing a psychologist is a normal part of your care, just like seeing any other healthcare professional.

How could seeing a Clinical Psychologist help?

Psychologists can help people in a variety of ways. Rather than prescribing medications, Clinical Psychologists are trained to help people talk through their problems. The person you see will have an understanding of your condition and the psychological impact of both the condition and its treatment.

Everyone is different and many people find it helpful to talk about how their condition may affect different areas of their lives. Sometimes talking through problems can help people to find better ways of managing their difficulties, gain confidence, feel more in control, and improve their overall wellbeing.

You will not have to talk about anything that you don’t want to.

Some examples of the issues we often discuss are:

- Feeling overwhelmed by your condition or being in hospital

- Feeling depressed or angry about your condition or your treatment

- Managing pain

- Problems with body image, confidence, or how you feel about yourself

- Worrying about your health or your future

- Having difficulties with carrying out treatments or coping with demanding treatment regimes

- Difficulties with family, personal or sexual relationships related to your condition or treatment

- Family-planning concerns

- Transition concerns (moving into adult services from paediatric care teams)

When and where could I see a Clinical Psychologist?

You might meet us for the first time at a clinic appointment, on the ward or at an outpatient appointment. If we meet for the first time at a clinic appointment, we may have a briefer conversation and then agree to meet again in private. Appointments are arranged in clinics between 9am and 4pm, Monday to Friday, and can last up to 60 minutes.

The first one or two sessions are about finding out how things are for you. This appointment can have lots of questions in it, but this is so that we can understand exactly how your condition affects you personally, get to know about other aspects of your life including work and family, and talk about how you are feeling and coping, so we can suggest what might be most helpful for you at the moment.

At the end of the appointment we will agree a plan together. Sometimes people don’t need any more sessions, or we may decide to meet for regular sessions for the coming weeks or months. We offer a range of talking therapies and we can decide together what help might be most useful.

What happens to the information I share with you?

Your visits are private and confidential. However, it may be beneficial to you if we share some information with the team caring for you. This will be discussed in your appointment and done with your permission. To improve the quality of the service you receive, we routinely inform the other members of your care team that we are having appointments together and when your therapy has ended.

All Clinical Psychologists have a legal and professional responsibility to tell somebody if they are worried that you or somebody else is at risk of harm. We would always discuss this with you first if it is safe to do so. Your Clinical Psychologist will talk more about confidentiality with you at your first appointment.

What should I do if I would like this kind of help?

If you feel that you might benefit from talking to a Clinical Psychologist, please tell one of the doctors or another member of the team who will be able to refer you. There might be a wait before you can be seen for your first appointment (the doctor or person referring you will be able to find out more about this).

Where can I get more information?

If you want to find out more about the Clinical Psychology service, please ask one of the doctors, nurses or another member of the team involved in your care, or call the psychology department on 0113 206 5897 and ask to speak to Dr Adrienne Renfrew.