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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.
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.
“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.”
Sickle Cell Society UK: website
Your Genes, Your Health website: Sickle Cell Disease
Expert Patient Programme website
Patient UK website: Sickle Cell Disease and Sickle Cell Anaemia.
Brent (The North West London hospitals NHS Trust) Sickle Cell & thalassaemia Centre website:
The NHS Sickle Cell and Thalassaemia Screening Programme website provides useful information about sickle cell disease, thalassaemia and other haemoglobin disorders, the various tests offered to people at different stages of life, and the development of screening and care for people with haemoglobin disorders. Below are some useful links on the site:
There are variations in antenatal screening policy across the UK. For example, in England and Scotland, screening for sickle cell disease in pregnancy is offered to all pregnant women irrespective of their family origin; however, in Wales it is only offered to women with a higher chance of carrying the condition. In Northern Ireland no such policy decision has been made yet. Go to the: UK National Screening Committee website for more information.
NHS Choice – Map of Medicine website provides useful information about sickle cell disease (SCD):
NHS Evidence Clinical Knowledge Summaries – sickle cell disease
NHS Choices – sickle cell disease