Scottish Government

CHAPTER 8: EDUCATION AND TRAINING IN GENETICS FOR HEALTHCARE PROFESSIONALS IN SCOTLAND

Background

The enormous investment at the end of the last century in the human genome project underlined the transformation of our understanding of health and disease. As we move into the 21 ^st century new technologies will be developed that will increase our capacity to predict, prevent, diagnose, treat, and manage chronic disease. Accordingly, an understanding of genetics needs to become a fundamental component of the scientific knowledge and competence of all healthcare professionals. Achieving this will require our health professionals to be equipped with the appropriate educational background. As genetic science has progressed so rapidly there is a danger that educational establishments and professionals in practice will not be able to keep up. Further, as the use of new genetic applications will be pervasive, education in genetics to a small group of professionals will not be an option, rather it needs to infiltrate the whole system from undergraduate to continuing professional development ( CPD) and from practitioners in primary and community care to those in specialist practice. One of the main principles of the development of this whole area is that any education of health professionals in genetics must be centred on the needs of patients and the public as informed consumers and patients with genetic diseases can play a part in the development of educational programmes.

The importance of ensuring the integration of genetics education and training across the NHS workforce, was recognised by the Department of Health and the Wellcome Trust, who jointly commissioned the Public Health Genetics Unit in Cambridge to develop a strategy for genetics education in the NHS across the UK. This comprehensive project was led by Dr Hilary Burton and the strategy, developed with input from key stakeholders from around the UK, was published in 2003 ¹⁵. The subsequent funding and establishment of the NHS Genetics Education and Development Centre based in Birmingham, was a key development from the English White Paper, and this initiative will build on the achievements of the strategy building project.

Introduction

There are two aspects to education and training in genetics for healthcare workers in NHS Scotland:

• Firstly, there is the need to raise awareness and ensure all healthcare professionals have an appropriate working level of knowledge in genetics.
• Secondly, there is the need to provide appropriate training for those who wish to work within the specialist genetic services in NHS Scotland and to ensure there are sufficient training places (and funded training posts) to enable the training of sufficient numbers to meet the additional workforce requirements of the service enhancements which are deemed necessary. This is particularly important in relation to the provision of sufficient numbers of genetic counsellors, who are coming to play an increasingly important role in the delivery of modern genetic services.

A. Awareness and Education for all Healthcare Professionals

General

As genetics comes to play an increasingly prominent role in the delivery of healthcare across all clinical specialties it is becoming increasingly important that healthcare professionals across NHS Scotland acquire an appropriate knowledge of basic clinical genetics. Ignorance of genetics and its health implications remains widespread at all levels, among healthcare professionals as among the public, resulting in lack of awareness of the possible health benefits from genetic services, inappropriate expectations and, in the case of medical staff, inappropriate referrals or laboratory investigations.

Ensuring effective and comprehensive education in genetics as it relates to medicine represents perhaps the greatest challenge for professionals involved in genetics, both those within the National Health Service and those in academic and educational positions. Raising awareness and promoting understanding of genetics in the general population, has been discussed earlier in this report. We will concentrate here on the educational and training needs of staff in the NHS, and the wider healthcare sector.

To provide education in genetics across the NHS is a major challenge and there are only a small number of experienced teachers in Scotland. It is recognised that consultant clinical geneticists in Scotland spend a considerable proportion of their time on educational activities and comparable time is likely to be spent by other groups of staff within genetic centres. While undergraduate education is primarily the responsibility of the Scottish Medical Schools and the Higher Educational Establishments providing training for the other healthcare professions, a high proportion of the overall teaching load is undertaken by NHS employed staff. No specific provision is currently made in staffing levels to undertake and coordinate this wide range of key clinical teaching activities for which demand is rapidly increasing. Time for teaching is, therefore, in direct competition with that required to deliver patient care.

In recognition of the difficulties, a multi-disciplinary group of professionals from across Scotland have come together in a collaborative venture to form the Scottish Genetics Education Network ( ScotGEN). This is an extant group of healthcare professionals, university academic staff and computer scientists involved in genetics education for nurses, midwives, doctors and other health professionals in Scotland. At the beginning ScotGEN received no official funding but in a spirit of collaboration this multi-professional group, with common goals, developed proposals for the development of computer delivered education in genetics for healthcare professionals in Scotland to address a very clear need. A successful bid from ScotGEN for resources for two years to develop their proposal, was incorporated as a core component of the pan-Scotland, collaborative bid for the Scottish Executive funding which was made available for the Genetics and Healthcare Initiative ( GHI).

The ScotGEN proposal has two components:

(a) The mapping of existing materials to core competences and specification of the work required. A detailed mapping exercise will be carried out identifying and collating materials available to teach the recognised core competencies. The core competencies for nurses, midwives and health visitors have been defined by a project commissioned by the Department of Health and carried out as a collaboration between the Genomics Policy Unit, School of Care Sciences, University of Glamorgan and the Medical Genetics Service for Wales, University Hospital of Wales ¹⁴. They have been welcomed by the Nursing and Midwifery Council. The competencies for medical students and medical practitioners are under development under the aegis of the Joint Committee on Medical Genetics and the Birmingham based NHS Genetics Education and Development Centre. They are expected to be available during 2006. As well as having access to a wide range of materials developed across Scotland by all the co-applicants, the project will liaise with the Genetics Education and Development Centre in Birmingham (funded by the Department of Health) and initiatives developed through the Genetics Knowledge Parks in England and Wales.

(b) Design of four teaching modules to be delivered in an e-learning format. Existing materials will be adapted and new materials designed as appropriate, to create four computer delivered (e-learning) course modules. The course modules will be designed so as to maximise the potential for scale ability to allow them to be used across a range of different courses applicable to the full range of healthcare professionals, and where appropriate for members of the general public. These will be designed for audiences at different levels, providing a background to the genetics of healthcare, the principles and practice of genetics, screening for genetic disease and genetic testing. Components of these modules will be designed to be accessible to the general public, with particular application in schools, for those with a family history of disease, and those participating in genetic studies such as GHI and Biobank. Development of further modules will be guided by the mapping exercise.

The ScotGEN Steering Group anticipate that by the end of two years they will have completed steps A and B so that four modules will be completed with pilot assessment of their contents.

The Group have developed links with the Centre for Evidence-based Pharmacotherapy at Aston University to provide links both to the education of pharmacists and to advise on the emerging therapeutic implications of pharmacogenetics. The network will extend its links to tap appropriate expertise as the need for genetic education for other professional groups such as dieticians increases.

Through her membership of the Advisory Board for the Birmingham Centre, a Scottish geneticist, one of the founding members of ScotGEN, will provide a link between the Scottish Group and the English initiative.

The Review Group fully endorse the ScotGEN approach and commend those involved for their enthusiasm and initiative in developing the venture thus far. However, the Group recognise that those leading the ScotGEN project already have full-time, demanding professional commitments and that the work they do for ScotGEN is over and above this. The Group, therefore, believe that the appointment of a full-time, dedicated Project Officer to support the ScotGEN Steering Group would help to drive forward this important project and facilitate the delivery of the clinical teaching modules as they are developed. Such a post could be based in NES where the post-holder can participate in, and coordinate with, the other activities of that organisation. In addition the post would provide a point for day to day contact with colleagues in Scotland as well as those in other parts of the UK, such as the NHS Genetics Education and Development Centre in Birmingham. The Group recommend that the post be funded for an initial period of three years, after which its continuation would be dependent on the outcome of an evaluation.

The Group therefore recommend to the SEHD in collaboration with NES that:

• The work already initiated by ScotGEN should be built on and ScotGEN be encouraged to take forward their proposed programme of work over the two years for which they have now been funded as a core component of the Scottish Executive Genetics and Healthcare Initiative.
• Funding should be identified to enable ScotGEN to receive additional funding after the initial two year period, to further develop their educational and training proposals including ongoing continuing professional development in relation to genetics for health professionals in Scotland.
• Funding should also be identified to resource the delivery of the educational packages they develop.
• Resources should be made available for the appointment of a dedicated Project Officer, for an initial period of three years, to support the ScotGEN Steering Group and help to drive forward this important project as well as facilitate the delivery of the clinical teaching modules as they are developed.

In discussion the Review Group agreed that the appropriate 'home' for ScotGEN would be NHS Education for Scotland ( NES) given that organisation's role in training and education across NHS professional boundaries. A central theme in the NES strategy is the development of an e-library for NHS Scotland. Basing ScotGEN under the auspices of NES would thus provide the opportunity to develop a genetics portal on the NES e-library as a means of providing a secure platform from which the e-learning based teaching materials of ScotGEN can be accessed by general practitioners, other healthcare staff and student groups. Such an arrangement would also enable NES to ensure mechanisms are in place to assess, quality assure and update the contents of the teaching packages appropriately.

The Review Group therefore recommend:

• ScotGEN should be formally linked to NES to provide a core 'home' for the design, commissioning and quality assurance of genetic education for all NHS professionals in Scotland.
• NES should consider the development of a genetics portal through the auspices of the NES e-library in order to provide an access platform for the delivery of ScotGEN teaching materials.
• Arrangements should be put in place for the coordination of the activities of ScotGEN and for monitoring the implementation of the Network's outputs.

The Review Group recognised the importance of mechanisms being in place to ensure that the requisite competencies are achieved in pre and post registration preparation. They therefore recommend that NES ensure that collaborative arrangements are in place with appropriate statutory bodies to ensure this happens.

Primary Care

The educational needs for practitioners in primary care are important as general practitioners and community pharmacists can hold a 'gatekeeper' role in the NHS for access to specialist services and, as previously discussed, are commonly the first point of contact for many patients. In addition, general medical practitioners are often the main source of referral to specialist genetic services and have an important role in the follow-up of patients and their families and carers. The important role that primary care practitioners can play in this area has been discussed in greater detail in Chapter 7.

General Medical Practitioners

The Group considered the role and educational needs of GPs. GPs are aware of the rapid developments in the field of genetics and the need to develop core skills. It is important, therefore, that education in genetics is incorporated appropriately in the training arrangements for GPs in order to enable them to develop these core skills.

Although Scottish GP vocational training schemes at present do not routinely include genetics, it would be possible to include a genetics module if the training for GP registrars was extended to include two years in general practice as part of a three year specialist training programme. Genetics training may also be provided as part of the other aspects of GP training, such as general medicine, obstetrics and paediatrics.

As previously indicated the Review Group are aware that although GPs appreciate the need to develop core skills in genetics for use in their everyday practice, the majority of GPs do not wish to become too deeply involved in providing a 'specialist genetic' service and have concerns regarding the development and retention of skills in a fast moving field. The consensus view, therefore, is that what would be of most value in supporting the majority of GPs would be:

• Continuation of specialist genetic services in which arrangements exist to enable rapid access to expert advice for GPs
• Easily accessible, up-to-date information available through resources such as the e-library which would enable GPs not only to provide information to patients, but also would be a useful aid for the maintenance of core skills.

The Review Group recommends that NES and the ScotGEN Steering Group ensure that as their programme is developed, the educational needs of GPs are fully addressed and that they work with those in Primary Care to develop decision support systems to facilitate service delivery and patient care.

We have discussed in the previous Chapter the added value that can be provided by the sub-set of GPs who have a particular interest in genetics and wish to develop enhanced skills in order to participate more fully in the provision of services for these patients. As we have seen some interest has been expressed, in the development and training of GPs with a Special Interest ( GPwSI), which would require 'Specific intermediate skills' training. It is important, therefore, that appropriate educational and training opportunities are also available in Scotland for GPs who have a special interest in genetics and wish to enhance their skills in this area. Work is currently underway through both the Virtual Genetics Group of the Royal College of General Practitioners ( RCGP) and the Birmingham Genetics Education and Development Centre to define the curriculum (for both GP trainees and hospital non-genetics trainees) and develop appropriate training courses and materials. The Birmingham Centre aims also to develop a curriculum for GPs with a special interest in genetics, as there are currently no formal training courses available.

The Review Group recommend to NES that:

• the educational needs of practitioners in primary care in relation to genetics should be scoped and developed in collaboration with the RCGP and the Birmingham Genetics Education and Development Centre and further addressed by:
  • developing e-library resources
  • ensuring the availability of appropriate training opportunities for GPs who wish to develop enhanced skills in genetics.

Community Pharmacists

It is vital that the training of pharmacists provides them with the necessary core skills in genetics and genetic counselling in order to allow them to undertake the increasingly complex advisory and prescribing role that is envisaged for them and that has been discussed previously.

The education and training needs of community pharmacists can be addressed by access to appropriate NES e-library resources and appropriate input to undergraduate, postgraduate and CPD activities.

The Review Group recommend that these educational and training needs of pharmacists in relation to genetics are addressed by NES in collaboration with the Royal Pharmaceutical Society of Great Britain, the Scottish Schools of Pharmacy and ScotGEN.

Dentists, Optometrists and Allied Health Professionals

In the course of their professional lives, all these groups of healthcare professionals will come into contact with patients with or at risk of genetic diseases. It is vital therefore that they have sufficient knowledge of genetics in order to allow them to make appropriate judgements in relation to the management of their patients and to answer their patients queries.

The Group recommend that NES together with the SEHD should work with educational establishments in Scotland involved in providing training for all groups of healthcare professionals, to ensure that genetics is appropriately covered in their relevant curricula.

B. Meeting the Need for Trained Genetic Counsellors in Scotland

We have discussed earlier in our Report the important role that genetic counsellors can play in the delivery of modern genetic services. We have pointed out that we expect this role to increasingly expand and the need, therefore, to address both the current shortfall in staffing numbers and to make provision for the necessary expansion of this workforce.

Considerable emphasis was placed on the value of genetic counsellors and their contribution, in the English White Paper and commitments were made to provide significant additional funding to enable both training opportunities and the number of funded posts to be expanded. Department of Health funded training posts have already been established in England and Wales to meet increasing demand for trained genetic counsellors. As a similar increase in demand is envisaged in Scotland, it is essential that similar opportunities for training be developed.

Prior to the development of training posts in England and Wales, the Association of Genetic Nurses and Counsellors ( AGNC) had fortuitously spent a considerable amount of time defining educational pathways for genetic counsellors as part of the preparation for professional registration. A UK registration system has now been established and a Registration Board appointed by AGNC members. Practitioners wishing to train as genetic counsellors with a view to registration must satisfy a particular set of requirements in one of two potential pathways towards registration.

Master of Science Degree in Genetic Counselling

(a) Attainment of a recognised Master of Science Degree in genetic counselling which includes a substantial clinical and experiential component.

(b) Completion of basic training in counselling skills of at least 120 guided learning hours.

Graduate with professional qualifications and experience

(a) Attainment of a relevant First or Master's Degree ( e.g. in nursing, biological or social sciences) consistent with the Nursing and Midwifery Council requirements for level 3 senior registered practitioner status.

(b) Attainment of an appropriate professional qualification ( e.g. nursing, midwifery, social work) and maintenance of current professional registration.

(c) Completion of a minimum of two years appropriate professional clinical experience in a health or social care setting.

(d) Completion of basic counselling training of at least 120 guided learning hours.

Over the past two years 29 genetic counsellors have submitted portfolios of competence-based evidence and successfully achieved registration. This has been an important landmark in setting UK-wide standards for practice and signifies the importance of mirroring the framework for training posts that have already been established in England and Wales when developing training posts in Scotland.

The primary aim of the established training posts is to support higher professional training in genetic counselling for new entrants to the specialty, from a diverse range of backgrounds. Although the posts were originally envisaged to facilitate individuals with entry level qualifications to receive training towards registration as genetic counsellors, this has been expanded to encompass training of individuals who do not fit the entry level criteria. These individuals may be aiming to work towards gaining the entry level criteria such as completing a Master's in genetic counselling. Currently in the UK only two MSc courses in genetic counselling are approved (Manchester and Cardiff).

Within Scotland there are two MSc courses in medical genetics (Glasgow and Aberdeen Universities) and a graduate diploma in genetic counselling (Queen Margaret). Taking elements from each of these courses there is sufficient validated material to establish an MSc in Scotland. Establishment of such an MSc should be a priority and could be developed through the ScotGEN Network as well as the three universities currently delivering the courses. A Scottish MSc would allow science graduates in Scotland access to training without having to travel to Manchester or Cardiff and might also attract students from the South. Each of the genetic centres in Scotland has established training and educational opportunities that, alone or in collaboration with each other or local educational facilities, would meet the approved criteria in England and Wales for a training centre. Funding for the posts would be required for 24 to 48 months (full-time equivalent) depending on the needs of the trainee (those already with entry level criteria requiring a shorter training period).

Additional funding will be required for education and travel and to recompense the training centres. Each trainee's requirements may vary so the development of individual learning contracts must be established so that funds are utilised most effectively.

Monitoring and evaluation of the training scheme will be essential to ensure that each centre is meeting its training obligations and the overall aim of the scheme. In England and Wales a professionally led panel has been established to oversee the training centres. We would envisage Scotland participating in the same QA scheme.

The Review Group strongly support the establishment of a Scottish MSc in Genetic Counselling and, in recognition of the inherent problems of only accessing the finite pool of nurses in Scotland in order to meet the increased demand for genetic counsellors, endorse the provision of training opportunities in Scotland which will also be open to other life sciences graduates. They recommend that NES should be resourced to commission a Scottish MSc in Genetic Counselling through the ScotGEN Network and in partnership with appropriate academic institutions. Funding should also be made available to enable trainees to undertake this course. In addition, they recommend that NES should be requested to undertake appropriate educational accreditation and enhancement activities in relation to the Scottish MSc in partnership with the academic institutions and other key stakeholders.

In order to ensure both career establishment and the development of the genetic counsellor posts in Scotland, a number of funded training posts and an appropriate number of establishment posts should be resourced for NHS Scotland. An initial scoping exercise to assess the possible supply and demand for genetic counsellors should be carried out. In addition, a career pathway in the subject should be built up to allow for appropriate career development and succession planning. Initially, depending on the numbers involved, the process of appointing trainees could use the same format as laboratory Grade A trainees, with trainees going to each Edinburgh and Glasgow in year 1, and then trainees to each of

Aberdeen and Dundee in year 2. These workforce issues need to be monitored so that training can be altered depending on the demands of the service.

The Review Group recommend to SEHD that following a scoping exercise to assess supply and demand, funded training and establishment posts for genetic counsellors are made available to allow the development of this workforce that will be needed to support the anticipated expansion of genetic services in NHS Scotland, and a career pathway in the subject should be built up to enable appropriate career development for this important group of healthcare professionals.

Birmingham Genetics Education and Development Centre.

The aim is for the Centre to provide a focal point for genetics education and training in the NHS. Their key activities will include undertaking genetics educational needs assessments and developing curricula and educational resources for NHS staff groups. The Centre will liaise with professional bodies and training organisations to encourage the integration of genetics into pre- and post-registration courses and continuing professional development. As well as its educational role, the Centre will also provide support to service development initiatives in genetics.

Although the core team will be physically based in Birmingham, the work of the Centre will be designed to involve colleagues throughout the UK to ensure coordination of education in genetics across the NHS workforce of the UK. The work programme of the Centre will be overseen by a Steering Group, on which the Health Departments of all four UK countries are represented. This commitment to a UK-wide approach has been recognised already by colleagues in Wales and the Welsh Assembly Government ( WAG). A collaborative team, part funded by the WAG, and composed of three groups - the Genomics Policy Unit, Wales Gene Park, and the Medical Genetics Service for Wales - work in close collaboration with the Birmingham Centre. In addition to WAG funding, the Medical Genetics Service for Wales has seconded staff to assist with educational delivery within the service in Wales. On behalf of the Centre, the Welsh team are leading the work on promoting genetic literacy for nursing, midwifery and health visiting professionals across the UK.

There would be clear advantages in Scotland working closely with the Birmingham Centre and other colleagues across the UK in order to avoid unnecessary duplication of effort in the development of curricula, as well as ensuring consistency of standards in education across the NHS workforce in the UK. To date initial discussions have been undertaken with colleagues in Birmingham and a Consultant Clinical Geneticist in Edinburgh, and a key member of ScotGEN, has been appointed to the Advisory Board of the Birmingham Centre. In addition, SEHD is represented on the Steering Group.

The Group recommend that formal links should be established between NES, ScotGEN and the Genetics Education and Development Centre in Birmingham.

In this developing educational strategy for genetics knowledge throughout the health professions in Scotland, it is recognised that many details, such as the content of the curricula and core competences, remain to be worked out. There needs to be an integral process of review and evaluation that will guide the advancement of the educational issues and safeguards to allow the underpinning of knowledge responsive to change. This flexibility is crucial as new developments and applications come about and as professionals undertake new roles and responsibilities.