Focus on Community Healthcare Professionals

The majority of community health and allied care professionals including GPs, health visitors, community nurses and social workers have few if any patients with sickle cell disease and Thalassaemia, even among those working in major cities such as London. As a consequence they often fail to recognise that they can play a pivotal role in prompting population awareness and supporting people with and at-risk of these genetic conditions. They are best placed to provide preconception information to their patient population in order to identify those who can benefit from pre conception testing and genetic counselling so as to promote reproductive choices.

The NHS Sickle Cell and Thalassaemia Screening Programme, see Sickle cell and thalassaemia screening: commission and provide, recommend screening of pregnant women by ten weeks of pregnancy, ideally screening should be offered to all childbearing men and women preconception this will enable them to make informed decisions about courtship, marriage and parenting. GP surgeries (Thomas et al 2005), family planning clinics, well man and well woman clinics, university and college health centres are best placed to offer preconception information and where appropriate testing as early as possible in pregnancy.

Taking account of cultural, economic, educational and social diversity services need to be tailored to meet the needs of the local community. Community healthcare professionals have a working knowledge of the local community therefore they are better able to devise strategies to give information in a format which best meet the needs of their clients.

For those who have patients with a disease state the primary objective is to enable the patient to gain a better understanding of their illness, learn how to care for themselves effectively in the community (Darzi YEAR??) and reduce the number of in-patient hospital admissions and the dangers of being exposed to infection. Educating the patients in how to avoid complications and how to deal with medical emergencies if and when they arise is essential. Strategies should be developed which will enable increasing patient autonomy, empowerment and the acquisition of skills for good self management.

Strategies for promoting the development of an effective service in a local area may include:

  • Knowledge of the demographic make up of the local population.
  • Awareness of the ethnic mix of the population.
  • Identification and an awareness of the populations with or ‘at risk’ of haemoglobinopathies and Thalassaemia.
  • Awareness of Purchaser’s intentions in respect of promoting services in the local area.
  • Awareness of national antenatal and newborn screening programmes.
  • Knowledge of Prenatal diagnosis and services available to expectant women / couples ‘at risk’ of having a child with a major haemoglobinopathy and the potential benefits and limitations of the techniques used.
  • Gaining an awareness of the health implications of living with major disease states and the specialist services provided in acute and community sector for supporting individuals, families and the community.
  • Awareness of national standards for care and management of people with sickle cell and Thalassaemia in community care settings (UK Forum 2006, UK Thalassaemia society 2008, Sickle Cell Society 2008, NCEPOD 2008).
  • Knowledge of services, resources available for supporting local developments.
  • Knowledge of local and national recommendations.
  • An awareness and understanding of national standards
  • Commitment to participating in provision of an equitable service.
  • Awareness of influential community representatives and how to access gate keepers.

Process / Planning

In collaboration and with local specialist Centres and voluntary organisations the process required for achieving the objective of promoting screening and counselling in Primary Care may include:

  • Identification of ‘at risk’ population in case load, clinic, school, surgery, client list.
  • Obtaining relevant data from a variety of sources - e.g. Department of Health report on Sickle Cell and Thalassaemia. Local strategic health authority annual report and purchasing intentions. OPCS statistics.
  • Identification of interested parties in local area - may include health and allied professionals and community representatives, e.g. Religious elders etc.
  • Identification of resources for promoting corporate strategies and objectives - human and material resources.
  • Getting started by listing only realistic and achievable targets, setting a time frame, identifying a system for evaluating the effectiveness of actions, publicising achievements and areas for further development (publish).
  • Attempting one goal at a time makes it less daunting and more likely to be achieved
  • Seek the support (and blessing) of key gate keepers - especially senior managers, purchasers, community representatives.

Health Promotion

It is essential to consider the health promotion and community healthcare needs of children and their parent as well as adults with sickle cell and Thalassaemia. This will contribute significantly to reducing occurrence of complications, encourage development of coping strategies, empower clients and encourage development of skills for adjusting to the day to day demands and experiences of living with these debilitating and chronic illnesses.

Educating the family, health and social carers and individuals plays a major role in reducing episodes of the illness, level of handicap, mortality and morbidity. Primary Healthcare professionals may contribute to improving services by:

  • Having an awareness of services / resources available locally e.g. - specialist Centres, specialist hospital clinics, health promotion resources, educational resources etc.
  • Having an awareness of voluntary organisations available for supporting clients.
  • Knowing the process and policy for screening / testing/ counselling e.g. General population testing, newborn and ante-natal screening.
  • Having an awareness of recommended management regime for children and adults e.g. Prophylactic penicillin daily, routine childhood immunisation, specific vaccination (Pneumovax), folic acid (UK Forum 2006, UK Thalassaemia Society 2008).
  • Education of child and parents, advice on general management, compliance with prescribed care and prevention of complications, development of coping mechanisms.
  • Having an awareness of management protocols for adult management (Sickle Cell Society 2008, UK Thalassaemia Society 2008) especially education for prevention of ill health, encouraging compliance with prescribed care, facilitating development of autonomy, confidence and self efficacy.

Specialist Service Providers

There are approximately 40 specialist Sickle Cell and Thalassaemia Centres / Services nationwide. The majority of Centres are managed and staffed by specialist nurses and a few have a multidisciplinary team of professionals which may include nurses, doctors, social workers and psychologists. Specialist Centres offer a range of resources which include information, literature, visual aids, advice, counselling, client support and screening services, see your local specialist National Sickle Cell / Thalassaemia Centre.

Fact Finding Exercise:

Make an appointment to visit your local or nearest Sickle Cell & Thalassaemia Centre.

Find out:

  • Proportion of the population with and ‘at risk’ of these conditions
  • How the Centre functions and who works there
  • The role of the Centre in promoting awareness
  • Who funds it and how does it work?
  • What educational resources and programmes are provided to support health, allied and other professionals?
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