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CHAPTER 7: THE ROLE OF PRIMARY CARE

Policy developments over the last few years in Scotland have seen an increasing shift of care from the secondary sector towards care in the Community by the Primary Care Team. Already approximately 90% of patients are dealt with exclusively within the community in this way. This trend will mean that more people will be managed for a greater part of their care by the Primary Care Team. As the proposals in the National Framework for Service Change are implemented, there will be even further moves in this direction. It is vital, therefore, that the role that primary care practitioners currently play, and potentially will play in the future, in relation to genetics is fully recognised and the educational and training needs that they will require to support them in fulfilling this role are carefully considered. We have highlighted previously the need to integrate genetics into all areas of healthcare, specialist and non-specialist clinical care. Nowhere is this more important than primary care.

The potential role for Primary Care in relation to genetics is considerable and as genetic knowledge increases, it can only expand further. Some of the areas in which they already have a role are:

• Raising awareness and understanding
• Supplying and adding to available information
• Responding to patient enquiries before or following a diagnostic test undertaken by people offered to them by private companies or over the counter at pharmacies
• Managing people's concerns, expectations and emotions
• Dealing with the social impact of genetic disorders on individuals and families e.g. relationships
• Recording accurate family histories
• Identifying potential genetic conditions
• Providing access to screening, testing and clinical health surveillance of those at risk
• Arranging referrals to specialist genetic services and taking responsibility for the continuing care of patients in the community
• Communicating risk to inform patient choice
• Supporting individuals in need of modifying life style or other factors to reduce risk
• Explaining and raising awareness that high impact tests may have implications for the patients relatives and involve wider issues such as employment, insurance, social relationships and psychological consequences
• Prescribing medication, being aware of and implementing developments in pharmacogenetics as they occur
• Providing and coordinating long term care of chronic genetic disease
• Recording information and communication of information between professionals, e.g. members of one family living in different geographical areas.

The importance of the NHS working in partnership with other statutory and non statutory agencies to provide holistic care within the community setting is a common theme of current policy statements. To further this aim, the Primary Care Team coordinating the provision of such care is multi-agency as well as multi-disciplinary and includes, amongst others:

• GPs
• Midwives
• Health Visitors
• Community paediatricians
• District, school and practice nurses
• Community psychiatric nurses
• Pharmacists
• Dentists
• Optometrists
• Dieticians and other Allied Health Professionals

Together with representatives from

• Social Services
• Voluntary and Independent Sectors etc.

In order to enable them to fulfil their current roles and be prepared for the expected expansion of role, it is vital that appropriate education and training in genetics is available. This will need to be tailored to accommodate the different educational needs of the various professional groups who work in primary care. In addition it will be important to have appropriate Continuing Professional Development opportunities available in order to allow individuals to keep up-to-date with developments in a fast-moving field. Amongst all professional groups there will be individuals who have a particular interest in genetics and wish to develop additional skills in this area. It will be important, therefore, to ensure that enhanced training is available for those who wish to acquire specialist skills.

Education and training in genetics are dealt with in greater detail in a subsequent section of this Report.

Nurses

From the discussion above of the wide ranging role that primary care practitioners can play in relation to genetics, it is apparent that nurses and midwives are key players. Midwives are in the forefront of implementing the current developments in pregnancy and newborn screening; health visitors in their role with families and contact with small children are well placed to identify children with genetic problems, and district and practice nurses are heavily involved in the ongoing care in the community of patients and families with chronic genetic diseases. The training needs of all these groups must be appropriately addressed in order to prepare them and enable them to integrate genetics into their everyday practice. The core competencies in genetics for nurses, midwives and health visitors have been defined and a competence based educational frame-work described, through a project commissioned by DH and carried out by a team from the Genomics Policy Unit, University of Glamorgan and the Medical Genetics Service for Wales, University Hospital of Wales ¹⁴. The subsequent chapter discusses ways in which appropriate training can be delivered in Scotland.

In addition to these groups, there are some nurses who wish to develop advanced skills and become genetic counsellors (or associates) who are usually based in genetic centres. The valuable role that these highly skilled nurses can play has been discussed previously. How their training needs can be met is discussed in the subsequent chapter.

General Medical Practitioners

Recent developments in genetic science have indicated that most common disorders have a significant genetic component in their aetiology. Though there is little work on the prevalence of genetic disease in general practice, in a recent study in seven general practices, serving ethnically and socially diverse populations in North London, a review of 1,823 sets of patients notes revealed a 10.4% prevalence of diseases with a significant genetic component in the practice populations. Familial cardiovascular disease, familial atopic disease, and familial psychiatric disease were the most prevalent 'genetic' disorders. These data indicate that a minimum of 1 in 10 of the patients seen in primary care has a disorder which has a genetic component to its aetiology and in which family history may influence management of the presenting individual and potentially of other family members. Yet, there remains a perception that genetics is concerned with the diagnosis of rare disorders that usually occur in children and so are of limited importance in every day practice. GPs are well placed to deal with genetic issues; they deal with families, they provide continuity of care over time, and they are familiar with, and used to dealing with, the practical problems of every day life that families need to address. It is vital, therefore, that awareness is raised amongst those in general practice and that careful consideration is given to the measures that are needed to support them and enable them to integrate genetics into their every day practice.

It became apparent in consultation and in discussions with colleagues in primary care in Scotland, that though GPs are aware of the rapid developments in the field of genetics and the need to develop core skills, the majority of general practitioners, given the pressures on their time, do not feel that acquiring an in-depth knowledge and trying to keep up to date in a field as fast moving as genetics would be the best use of their time. The Review Group therefore concluded that the needs of GPs in this area could best be met by:

• Facilitating the acquisition of adequate knowledge and core skills in genetics to enable GPs to identify those amongst their patients with common diseases where there may be a significant genetic component in the aetiology and who, therefore, may require more close clinical monitoring to facilitate the early detection of clinical symptoms and signs. This in turn would allow early treatment or advice on lifestyle modification. The importance of obtaining a good family history on all patients is essential for identifying these patients. In time as knowledge progresses, the development of predictive testing for these disorders will follow, and this knowledge will need to become incorporated within training arrangements as it comes 'on stream'.
• Continuation of specialist genetic services, in which arrangements exist to enable rapid access to expert advice for GPs, on individual patients problems, as well as on who, and how to refer to specialist services. In addition further support could be provided by close liaison and joint working between the genetic centres and primary care through expansion of the role of genetic counsellors, and the employment of GPs with a special interest in the subject on a sessional basis within genetic centres (discussed in detail below).
• A source of up-to-date information that they can readily access in order to deal with patient enquiries about a wide range of issues involving genetics.

To meet the first of these needs, appropriate educational and training opportunities need to be available in order to allow GPs to develop the core skills that they will require. This is discussed further in the subsequent chapter on training and education.

In discussing the second of these needs, whilst acknowledging the important role that consultant clinical geneticists play in providing a source of expert advice for GPs about individual patients, the Review Group considered that an effective and cost effective way of enhancing the support for primary care could be provided by expanding the number of genetic counsellors so that, based on the model of the cancer genetic services in Scotland, their role can be further developed and expanded to encompass general genetic problems. If sufficient genetic counsellors were available in each of the four genetic centres, dedicated individuals could be assigned to work in close liaison with local primary care teams to support them in providing for the genetic needs of their practice population. Not only could these highly skilled counsellors liaise with general practice, but the service could be developed so that they may be deployed for part of their time to provide a counselling service within the community setting working alongside their colleagues in the primary care team, thus enhancing the gate keeping role undertaken in primary care. In addition, an adequate workforce would allow expansion of nurse led services to support the delivery of genetic services in remote and rural areas. The training needs of nurses and other life science graduates who wish to develop enhanced skills in genetics is discussed in a subsequent chapter on training and education.

The Group recommend that a scoping exercise be carried out to assess the supply and demand for genetic counsellors. The identified number of required establishment posts, and an appropriate number of funded training posts should be resourced to support the development and expansion of genetic services in NHS Scotland and to facilitate the integration of genetics into other appropriate clinical specialties.

Although these measures will meet the needs of the majority of general medical practitioners, there will be GPs who have a particular interest in genetics and wish to develop enhanced skills. Such individuals could not only play a valuable role in helping to improve the services for patients with genetic disorders, but they could, alongside genetic counsellors provide a focus for raising awareness of genetics within the primary care setting and play a role in providing appropriate support, training and education in the community. The English White Paper on Genetics includes a commitment to establish and fund 10 GPs with a Special Interest In Genetics ( GPwSI) as a means of providing opportunities for GPs who are interested in taking on this role and as part of a strategy to extend the knowledge and understanding of genetics and its role in healthcare into mainstream NHS care.

However, the concept of GPs with a Special Interest in Genetics, working in the way envisaged in England, is neither a model that is felt to be appropriate in Scotland, nor in line with policy developments in primary care in Scotland to date, though this may change as the proposals in the National Framework for Service Change are taken forward. Nevertheless, the Review Group recognise that it will be important to provide opportunities for GPs who

wish to pursue the acquisition of enhanced skills in genetics, to use these skills. The Group are aware of an interesting model that is being proposed in Tayside based on an approach trialled in London at Guy's Hospital. The genetic service in Tayside propose to recruit GPs with enhanced training in genetics, to be employed on a sessional basis, within the specialist genetic service in Tayside. These GPs will work closely with their colleagues in primary care to develop protocols and shared care arrangements for the relatively large number of patients with chronic genetic disorders who require long-term follow-up and care, and who have complex needs such as those with neurofibromatosis and Huntington's Chorea. The Review Group were impressed with this proposal and consider that it is a model that could work well in Scotland and would be more appropriate in the Scottish setting than the model proposed in England. Earlier in this Report we have described the role clinical geneticists play in relation to the follow-up of patients with chronic genetic disorders. Developing the model of GPs with a Special Interest working within the specialist genetic service, would help to ensure that the skills of the genetic specialists are better utilised. Such GPs would bring their generalist skills to the specialist service and take their specialist skills to the community to support their GP colleagues.

As previously discussed, the policy direction in Scotland is for patients to be cared for increasingly in the community, with primary care delivering patient centred, high quality, integrated services with partner agencies as locally as possible, within the context of Community Health Partnerships ( CHPs). GPwSI within genetic services will be ideally placed to help integrate the services between primary care, specialists and other statutory and non-statutory agencies. They will also be able to have relevant and up to date information regarding the services available for people with particular conditions within the local population and the professionals providing their care. A Scottish framework for GPwSI is being developed and any GPwSI appointed in medical genetics will need to work within this framework when agreed.

GPwSI in each of the four Scottish Genetic Centres could work collaboratively (in association with the MCN for clinical genetics) to develop shared care protocols for each of the major groups of chronic genetic diseases which would lead to standardisation in the quality of care of such patients across Scotland. In addition, working with others, they could have management responsibilities to ensure that the agreed pathways of care for the people with long term genetic conditions are accessible, appropriate and sustainable e.g. the clinical lead for the pathway of care for Huntingdon's chorea.

The Review Group recommend to the SEHD that the Tayside proposal for the sessional employment of GPs within the specialist genetic service be funded as a demonstration project, with a view to the model being developed across Scotland if shown to be successful on evaluation. Details of the Tayside project can be found in Appendix 9.

Educational tools and training courses for GPs who wish to develop enhanced skills in genetics are currently being developed by the Birmingham Centre for Education and Development in Genetics, in collaboration with colleagues in primary care and the Royal College of General Practitioners.

Community Pharmacists

Every day 600,000 people across Scotland visit their local community pharmacist. Thus, community pharmacists are often the first professional point of contact for patients with health concerns and as the Scottish Executive Strategy on Pharmaceutical Care is implemented they will be playing a much greater role in the provision of 'frontline' services for patients in the community. It is important, therefore, that the contribution, both actual and potential, which pharmacists can make is recognised and that the training of pharmacists equips them with the necessary core skills in genetics in order to allow them to become 'informed practitioners' able to undertake what will become an increasingly complex advisory role as developments in genetic testing and pharmacogenetics occur.

The Scottish Executive Strategy Document 'The Right Medicine: A Strategy for Pharmaceutical Care in Scotland' encourages joint working between medical and pharmacist practitioners. Recent Medicines legislation permits the introduction of supplementary prescribing across the UK. Ministers in Scotland have decided that supplementary prescribing will be implemented in NHS Scotland and this concept is being actively rolled out across Scotland. Supplementary prescribing by pharmacists facilitates joint working, particularly between community pharmacists and GPs and hospital doctors and pharmacists by allowing registered medical and dental practitioners to better utilise pharmacists expertise for the benefit of patients.

As these shared care arrangements are further developed, community pharmacists will come to play an expanding role in the pharmaceutical management of all patients including those with genetic disorders, particularly those with chronic genetic disorders who require long-term management in the community.

Advising patients on pharmacy only medication e.g. Simvastin in Familial Hypercholesterolaemia or over the counter medicines for the management of a condition with a genetic component may become one of the core functions of the community pharmacists.

As developments in pharmacogenetics come on stream, where genetic testing may enable drug choice and dosage to be tailored to the individual patient, with the aim of maximising response and minimising side-effects, pharmacists will also become involved in advising on and implementing these developments, alongside their independent prescribing colleagues.

As developments in genetic science occur, more and more over-the-counter genetic tests are likely to become available over the next few years. As many of these will find an outlet through community pharmacists, it will be pharmacists who will be called upon in the first instance to discuss and explain the benefits and shortcomings of such tests to their clients. Again it will be important that the training of pharmacists equips them to deal with these complex enquiries.

The training and educational needs of pharmacists are addressed in the subsequent chapter.

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