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Living with Sickle Cell Disease, being an accredited Expert Patient Programme Facilitator and Regional Care Advisor for Sickle Cell Society

Mike’s story of this recessively inherited condition.

Mike has sickle cell disease and talks about his varying experiences of the NHS, depending on the geographical locality he was living in at the time. Mike talks about the severe acute pain associated with sickling crises and how he has used his experience of illness to become an expert patient. Mike successfully manages his own illness and trains others to become empowered in managing their illness and acts as an advocate for others with sickle cell disease.


  • reflection Point for reflection

    1. Mike talks about the Expert Patient Programme to help empower patients and carers. How much information do you have about it? How useful could it be for your client group?
    2. What are the services like for sickle cell disease in your geographical location? Could these be improved in any way?
    3. A key point raised by Mike is that of the patient as an expert, and the importance that this can have in empowering the patient and communicating with healthcare professionals. He says “The Expert Patients Programme proves to be very resourceful in the areas of pain management...communication with health professionals..., coping and also acceptance......the power of self-management should not be underestimated .... One has to be mindful that everybody’s experiences are as individual as the person. Therefore an immeasurable valuable tool would be to listen to the service user”.

    Reflect on the learning outcomes in genetics for GPs and consider whether the recognition of the expert patient, and the role that this can have on the management of a condition, should be included as a learning outcome.

  • Activities Activities

    1. How would you manage the episodes of pain that Mike refers to? Go to the North West London hospitals NHS Trust Brent sickle cell & thalassaemia centre web pages on management of acute complications to find out more about the management of painful crises.
    2. What advice would you give to couples regarding screening and testing?
    3. In the UK, screening for sickle cell disease is offered to all newborns. Mike’s parents were informed of his condition a few months after his birth. How might you communicate the information that a new baby is affected by sickle cell disease to parents? TheNHS Sickle Cell & Thalassaemia Screening Programme website has a comprehensive guide for parents and healthcare professionals who care for and treat children with sickle cell disease.
    4. Do you work in an area of low or high prevalence of sickle cell disease? How and where would you obtain credible, adequate information about this condition for service users?
      • Based on the NHS antenatal screening policy for sickle cell and thalassaemia, high prevalence areas are those where sickle cell disease is estimated to affect more than 1.5 per 10,000 pregnancies. Low prevalence areas have figures lower than 1.5 per 10,000.
      • There are numerous sources where you can find information about sickle cell disease, several of which are signposted in the further information section below.
  • quotes Quotes to reflect upon

    “I must stress that depending on the mindset ambition focus also pain a person can achieve within reason whatever they set their mind to achieve with immeasurable success.”

    “…everybody’s experiences are as individual as the person therefore an immeasurable valuable tool would be to listen to the service user…”

    “…the EPP is something that every person that has sickle cell should embark on and carers alike. It doesn’t eradicate your problems but it certainly does alleviate some of the stresses associated to living with this at times debilitating lifelong condition.”

    “There have been mountain top and valley experiences.”

  • Further Information Further Information

How does this story relate to professional practice?

  • cogs Nursing Competencies

    [We have linked this story to the Nursing Competences in Genetics (NCG) for nurses, midwives and health visitors. Further information on the competence frameworks can be found here]

    Mike refers to the issue of being tested and screened. He has identified how individuals need to be referred to genetic services (NCG 1) to receive genetic counselling, enabling them to receive information from genetic experts.

    Mike says that he became aware of the condition when he was about 7 and 10 years old. This information was then endorsed by his doctor. He feels it was adequate as it fitted his degree of knowledge at the time. NCG 2 states that information should be tailored according to knowledge and language level and as a child, it needs to be useful for them and something they can take on board.

    Mike raises the issue of how a lack of knowledge amongst the community is not positive, as people do not then realize that they have reproductive choices that they could make, depending on whether they have carrier status or not. This story supports NCG 5, as the consequences of information affect individuals, families and communities.

    Mike mentions how websites might be a useful tool that nurses could use to signpost their patients to information. In NCG 7 it is recognised that information for patients should be credible and represent the condition accurately.

  • cogs Midwifery Competencies

    Content relating to the midwifery competencies in genetics will appear here shortly.

  • cogs Learning Outcomes for GPs

    We have linked this story to the learning outcomes for GPs listed in the Royal College of General Practitioners Curriculum Statement 6 ‘Genetics in Primary Care’, which describes the knowledge, skills and attitudes that a GP requires when relating to patients and families with genetic conditions. Further information on these learning outcomes can be found at:

    Mike talks about the need to raise awareness about sickle-cell disease, particularly in the community and also to identify those who might be at risk. In doing this, GPs need to be aware of the antenatal, newborn and other screening programmes available in order to identify those who might have the condition or be a carrier (GP-3c; GP-4e), and also be aware of the different uses of genetic tests such as carrier testing, and their limitations (GP-3e).

    Sickle-cell disease is common in people of African, Mediterranean, Middle Eastern, and Indian ancestry and in people from the Caribbean and parts of Central and South America. GPs should be aware that the make up of the local population may affect the prevalence of sickle-cell disease within that population and influence attitudes towards it (GP-5).

    A key theme in Mike’s story is around both health professionals and patients being proactive in their management of the condition. Mike talks about the importance of the role the GPs can play in raising awareness of sickle-cell disease and says ‘it would be enlightening to see GPs accessing information and showing more proactivity’. One way in which this might be achieved is by GPs keeping abreast of clinical advancements and new therapies and communicating this information effectively to the local population (GP-9). Furthermore, by signposting patients to the appropriate support services available (GP-1i) and communicating genetic information in a clear and understandable way, health professionals can help empower patients to make informed choices and decisions about their care (GP-2b).

  • cogs Learning Outcomes for Medical Students

    Content relating to the learning outcomes in genetics for medical students will appear here shortly.

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