Last Modified: 2:10pm 05/09/2022

Haemoglobinopathy

The Haemoglobinopathy Service, also known as the Red Cell Service, is for people with red cell blood disorders which includes sickle cell disease, thalassaemia, and rare inherited anaemias. This webpage describes the services available in Milton Keynes and the Thames Valley Network and includes key contact details.

Milton Keynes Haemoglobinopathy team is responsible for the day-to-day clinical care of your blood disorder. The Oxford Specialist Haemoglobinopathy Service has oversight of all patients across the Thames Valley. There is a monthly Multidisciplinary Team meeting (MDT) where we discuss patients with a new diagnosis of a haemoglobinopathy disorders, and anyone who has had complications or needs a change of treatment. There is also national MDT for more complex patients. All patients have an annual review appointment once a year. This is a longer appointment to go over your condition, address any questions you have, and look at new treatment options available.

Clinical Team

  • Dr Magbor Akanni, Consultant Haematologist and Haemoglobinopathy Lead
  • Sophie Clarke, Haemoglobinopathy Specialist Nurse

Haemoglobinopathy Outpatient Clinic

Every Friday morning from 09:00am – 12:30pm

Annual Review clinic takes place on the second Friday of every month. These clinic appointments are longer to allow us time to talk and discuss your condition and how we aim to keep you well. They are supported by the team from Oxford.

The service uses video, telephone, and face-to-face appointments. Face to face appointments are held in the Haematology Clinic.

You may be asked to have a blood test when you attend your appointment.

If you need to re-schedule your appointment, contact the Patient Pathway Co-ordinator on 01908 995 816

Day Unit

Ground Floor, Cancer Centre, Blue Zone, Milton Keynes University Hospital NHS FT

The Day Unit manages:

  • Planned transfusions
  • Venesections
  • IV Iron infusions

Tel: 01908 996 351

Monday to Friday: 09:00am – 18:00pm

Planed Care and Exchange Blood Transfusions

Planned red cell exchange transfusions for patients with sickle cell disease are carried out at the Therapeutic Apheresis Unit (TAS) in Oxford, NHS Blood and Transplant, Level 2, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9BQ

For inpatients, TAS also provide urgent/emergency exchange blood transfusions in Milton Keynes.

Tel: 01865 387 938

Urgent problems

If you are worried that you need urgent attention for your blood disorder or have a medical concern (e.g. if you have sickle cell disease and think you may be developing a crisis) you should attend the nearest Emergency Department (ED) for assessment.

If you are admitted to the hospital, please contact your Haemoglobinopathy Specialist Nurse or ask the ward team to contact her on your behalf.

Non-urgent problems

If you have questions about your condition, medications, treatment or need other support, please contact the Haemoglobinopathy Specialist Nurse.

Inpatient care

If you need to be admitted to hospital for treatment, we will always try to accommodate you on Ward 25, although you may be on another ward until we have a bed for you. Even if you are on another ward, your medical care is still be managed by the Haematology Team.

Contact details

Sophie Clarke, Specialist Nurse

Tel:01908 995 834

Email [email protected]

Patient Pathway Coordinator

Tel: 01908 995 816

Feedback and Service Improvement

We welcome your feedback, so if you have comments or concerns, please speak to a member of the team.

PALS

If your team is unable to resolve your concerns, please contact our Patient Advice and Liaison Service (PALS).

Healthwatch

Healthwatch is committed to improving health and social care service through listening to your experiences.

Service improvement

To get involved in improving the local service, please contact your Specialist Nurse.

Patient information

For patients: Wessex and Thames Valley HCC

Patient Education and Support Group

Monthly online network wide patient education and support group is available for people with rare inherited anaemias, sickle cell disease, and thalassaemia. Please contact your Specialist Nurse for more details.

Patient Information Leaflets

The service offers a wide range of leaflets such us Sleep, Travel, Nutrition, Careers and others. Please ask your Specialist Nurse.

Psychological Support

The service has a regional clinical psychologist who works 2 days a week across adults and paediatrics based in Oxford. If you would like to be referred, please contact your Specialist Nurse or discuss at your next clinic appointment.

Sexual Health

Young persons under 25

Adults: iCaSH: Integrated Contraception and Sexual Health Services

NHS Resources

Also known as

Red Cell Service