I am writing in relation to the House of Lords and House of Commons Joint Human Right Committee enquiry into experiences of people with learning disabilities receiving care in general hospital services and the experience of service development in NHS Lothian, Scotland.

  The Committee will be aware of the evidence of the increasing and ageing learning disability population, which in turn impacts on all aspects of health services, including general hospital care. This phenomenon is going to continue and as a consequence general hospitals will be required to provide more treatment for people with learning disabilities in the future; many who will have multiple, complex health needs. A useful article that was published in the British Medical Journal is enclosed. NHS Lothian is a large health service board that covers the City of Edinburgh, East Lothian, Midlothian and West Lothian, with the total population being some three quarters of a million. There are the full range of Primary Care, General Hospital Care and Specialist Services available for children and adults with learning disabilities. NHS Lothian has had a specific focus on addressing the health needs of people with learning disability in general hospital settings for over a decade.

  The focus on patients with learning disabilities in general hospitals in Lothian resulted from a complaint regarding the care of a person with learning disabilities while undergoing medical and surgical care at the Western General Hospital, Edinburgh. At that time the Director of Nursing recognised there were particular care issues and needs experienced by people with learning disabilities. She requested that lead nurses from the general hospital and learning disability services collaborate to develop and review policies and procedures that were in place to ensure needs were met more effectively in the future.

  Since then there has been a continued and sustained focus on ensuring that the health needs of people with learning disabilities are fully responded to within general hospital settings.

  To the best of our knowledge NHS Lothian was the first health service to establish a dedicated liaison nursing service, based within general hospitals and staffed by experienced learning disability nurses. The service that has evolved and continues to be developed is commonly referred to as "The Lothian Model". Fundamentally the model reflects a person-centred approach to care and provided additional support to patients and their carers and families. The service also seeks to ensure there is additional support and access to specialists in learning disabilities with advanced knowledge and skills of the health and care needs of people with learning disabilities.

  The focus of the model is wherever possible on pre-admission planning and assessment followed by communication and collaboration with colleagues in general hospital services to ensure that the care journey is appropriate to the needs of the individual patient. This aspect of the model is important as due to the cognitive and communication impairments experienced by many people with learning disabilities, ensuring effective communication and liaison across and between health services is vital if the care journey is to be effective. The liaison nursing role includes a focus on education and development of colleagues in all wards and departments within the general hospital to ensure that they have an understanding of the broad care issues affecting people with learning disabilities.

  For example education seminars have been developed on issues such as capacity and consent. These have been delivered to a wide variety of professional groups including doctors, allied health professions, nurses and many others. Often education sessions are provided to small groups of staff within their clinical areas thereby ensuring individual needs are addressed locally. The liaison nursing service acts as a bridge between primary care, specialist learning disability services, social care services, family carers and independent sector care providers. The care needs can be challenging where there are unplanned and unscheduled admissions to general hospitals which can occur at any time of the day or night. The liaison nurses as a consequence develop close relationships with colleagues in areas such as Accident and Emergency, Acute Receiving Wards, Outpatient Departments and Day Surgery Services. By developing close working relationships and collaborating with colleagues in these clinical areas it is often possible to reduce the possibility of poor experiences for people with learning disabilities and their carers. The system however relies upon general hospital colleagues recognising the need for additional assessment and support and triggering the referral to the liaison nursing service. Following this it is also possible for the liaison nurse to ensure that there is access to specialists such as speech and language therapists, psychiatrists who specialise in the mental health needs of people with learning disabilities and clinical psychologists. The model is also effective when there is a planned admission and it is possible to undertake domiciliary home based visits to undertake assessment of need that can then be built upon and shared with colleagues within specific clinical areas within the general hospital.

  As part of the establishment of the liaison service within Lothian, work was undertaken to try and identify people with learning disabilities receiving general hospital care.

  This proved challenging as no dedicated system is in place that enables people with learning disabilities to be identified, unless the person referring them for care specifically highlights this as an issue. In some clinical areas, such as neurosciences and gastroenterology, colleagues within general hospitals get to know some people with learning disabilities and their families who are frequent and regular attendees. This can be particularly helpful in ensuring that the liaison nurse is able to work with colleagues in these clinical areas to ensure that changes in care needs are addressed wherever possible.

  The Mencap Report, Death by Indifference, highlights the experiences of six people with learning disabilities in England receiving general hospital care. Scotland has experienced challenges when people with learning disabilities access hospital care. The Fatal Accident Inquiry into the case of Mr James Mauchland highlights this. Mr Mauchland was a man with mild learning disabilities and associated mental health problems that died following an unobserved fall in a psychiatric hospital. Following this he had numerous transfers between mental health and general hospital services. The trauma to his cervical spine that resulted from his unobserved fall was not diagnosed and contributed to his premature death. Mr Mauchland's sister reported the death to the Procurator Fiscal which subsequently resulted in the Fatal Accident Inquiry. There were a range of findings made by the Sheriff Principal, Sheriff Dunbar, and a copy of the findings is appended. Within Scotland there have been other Fatal Accident Inquiries into the circumstances of the death of people with learning disabilities within general hospital services. Regrettably the cases detailed within the Mencap Report and those of Mr Mauchland are, in the experience of the writer, not isolated.

  In response to the findings of the James Mauchland Fatal Accident Inquiry the Scottish Executive have been pro-active in issuing national guidance to all NHS Boards regarding the care and support of people with learning disabilities in general hospitals. A copy is appended. Additionally the Scottish Executive held an event for NHS Board Chief Executives and Nurse Directors in late 2006 regarding the need to develop and improve services for people with learning disabilities within general hospitals. Specific guidance has been issued in 2007 by the Scottish Executive to all NHS Board Chief Executives and a copy is attached for reference. As a result of the developments within Scotland many NHS Boards have been pro-active in developing dedicated liaison nursing services, drawing on the knowledge and skills of learning disability nurses. At the time of writing half of the NHS Boards have established a dedicated service and many of the others are in the process of developing proposals to establish one locally. A Scotland wide event was held earlier this year for liaison nurses currently in post and this had led to the creation of a learning disability liaison nursing national network.

  This network is now seeking to collaborate across Scotland in relation to the development of issues such as admission and discharge protocols and disseminate and share best practice to ensure consistency and continuity of care throughout the journey in general hospitals.

  NHS Quality Improvement Scotland and NHS Education for Scotland, two of Scotland's special health boards with a country wide remit for promoting and developing quality within health care and in education have been pro-active in focusing on the needs of people with learning disabilities. NHS Quality Improvement Scotland developed a Best Practice Statement, Promoting access to health care for people with learning disabilities—a guide for frontline NHS staff which includes an audit that can be undertaken by local clinical teams to self access on how accessible their local service is for people with learning disabilities and support changes and developments in their service. A copy is enclosed. Further NHS Quality Improvement Scotland has developed a set of Quality Indicators for learning disabilities that include a focus on the care of people with learning disabilities in general hospitals. A multi-agency pilot inspection of services for people with learning disabilities was undertaken within NHS Ayrshire and Arran that drew on the learning disability quality indicators to inspect general hospital services. This pilot is now the subject of an evaluation that will inform the development of future multi-agency inspection of services for people with learning disabilities in Scotland. The writer anticipates that there will be a continued focus on general hospital services as a result.

  NHS Education for Scotland funded the development of continuing professional development modules with a specific focus on the needs of people with learning disabilities. A new module, Promoting access to health care for people with learning disabilities, is being developed.

  I hope this information is helpful to the Committee and look forward to the outcome of the inquiry. Please let me know if you require any further information or if I can be of assistance.

Michael Brown

Nurse Consultant

  Appended[55]:

  1.  British Medical Journal Health Needs Article.

  2.  NHS Quality Improvement Scotland Best Practice Statement.

  3.  Findings of James Mauchland Fatal Accident Inquiry.

  4.  Scottish Executive communication to NHS Boards.