The keys to life - Improving Quality of Life for People with Learning Disabilities

People with profound and multiple learning disabilities

Definitions and numbers

It is widely acknowledged that there is a group of people with learning disabilities who have a complex range of difficulties which may include:

• profound learning disabilities
• physical disabilities that limit them in undertaking everyday tasks and often restrict mobility
• sensory impairment
• complex health needs, i.e. epilepsy or respiratory problems, eating & drinking problems
• challenging behaviour
• restricted communication, i.e. pre-verbal though a small number have some spoken or signed language

People with these characteristics are described as having profound and multiple learning disabilities (PMLD) or profound intellectual and multiple disabilities (PIMD). All, however, have the capacity to benefit from good health care and are able in various ways to communicate their satisfaction or otherwise with their quality of life.

The causes of PMLD are many and varied. They include genetic disorders, acquired brain injury or brain damage as a result of infection. Causation may be ante-, peri- or post- natal. For many there is no known causation. It is estimated that the prevalence of PMLD in the general population is 0.05 per 1,000. This figure is derived from a survey undertaken in Scotland and would lead to a figure of 2,600 people with PMLD in the country. This is possibly an underestimate and a useful working figure would be 3,000. These numbers will increase with better survival rates, not only in the neonatal period but into childhood and adulthood, due to advances in medical care.

The same as you? raised awareness of people with learning disabilities and has resulted in many improvements in services for people with PMLD. People with PMLD can and do lead meaningful lives but they require a high level of support with respect to all activities of daily living. Not only do people with PMLD require fully trained staff with specialised knowledge of their healthcare and communication needs but communities need to be made fully inclusive through the provision of both intellectual and physical access. Despite improvements in service delivery in the last decade, people with PMLD still confront barriers to good quality health care, education, leisure activities and support services.

Healthcare issues for people with profound and multiple learning disabilities

Life expectation is limited for people with PMLD, but the lessons of recent decades are that with good health and social care peoples' lives may be extended far beyond the expectations of 20 years ago. Regrettably, there are still many premature deaths of people with PMLD caused by the lack of reasonable adjustments to facilitate their survival, causing delay or problems with diagnosis or treatment¹⁰⁰ .

People with PMLD exhibit a different pattern and higher frequency of health disorders which, coupled with communication challenges, leads to barriers in accessing and receiving healthcare.

Mortality is high among people with PMLD, with over 20% of people with profound and multiple learning disabilities dying in a 10 year period¹⁰¹. The principal causes of death arise from epilepsy, respiratory problems and difficulties in eating and drinking.

The key issue for all effective health care for people with profound and multiple learning disabilities is good communication between the family, carers and all involved health professionals. The importance of listening to the families and carers and respecting their knowledge and experience must be acknowledged by all health staff. Partnership working should also be strengthened between health professionals from the community, including allied health professionals, who have specialised knowledge of persons with PMLD and the health professionals in the acute sector. Procedures should be put in place by GPs and other community health professionals so that in the event of an emergency admission all health staff are able to respond appropriately to the needs of the person with PMLD. There is a need for specialised training for all health professionals on communication and learning disabilities in general and people with PMLD in particular.

Good practice

Communication with people with learning disabilities and complex needs is a four week programme offered to medical students at the Clinical Skills Centre, Ninewells Hospital, University of Dundee, delivered by PAMIS and family carers. This highly successful programme is a self-selected component, offered to medical students at the Clinical Skills Centre. The medical students have the opportunity to access training from a wide range of professionals and family carers. The programme also offers the opportunity to visit a variety of care settings providing services to both children and adults.

Invasive Procedures

The health-related problems described above for people with PMLD necessitate a wide range of interventions in both the family home and in the full range of services they use, including nurseries, schools, adult day and respite services as well as NHS facilities among them acute hospitals. Such procedures include dealing with gastrostomies, tracheotomies, ventilation, responding to seizures and coping with a wide range of difficulties related to continence. It must also be noted that people with PMLD are typically underweight compared to their non-disabled peers, so when prescribing the dosage of drugs this should be taken into account. Such interventions have been described as "invasive procedures". These procedures are not only life enhancing but lifesaving.

Family members routinely provide such healthcare support, as do many of the service providers. However a recent national survey in Scotland undertaken by PAMIS and the White Top Research Unit, University of Dundee, has shown that there are still issues. The survey identified many barriers to delivery ranging from failures in policy through to lack of staff competence¹⁰². Failure to provide the needed interventions resulted in cases of exclusion from the service or family members having to attend the service to provide the support themselves, as well as unnecessary admissions to hospital. A follow up study of services that had indicated the barriers had been overcome revealed how effective, integrated strategies could be developed¹⁰³. In such cases delivery of the procedures were seen as part of the overall programme of person centred, healthcare support. In others, however, the invasive nature of the interventions set them apart as a result of the barriers encountered.

There is also a growing trend for health professionals to suggest that enteral feeding should be the preferred option rather than looking into other ways of preventing aspiration. The enjoyment of eating is one of the pleasures for people and removing that should only occur as a last resort. There are regional pockets in Scotland where there are significant increases in the numbers of people with PMLD being fed non-orally. Some further research on the necessity of non-oral feeding is merited and should be conducted in the context not only of health requirements but also the impact on the quality of life on the person and their family.

In response to the research and its recommendations, the Scottish Government established a Short-Life Working Group, led by PAMIS, to develop a Scottish quality framework for the delivery of invasive procedures in a variety of settings. In addition, to the framework, a toolkit will be developed to support statutory and third sector organisations in all service settings, using good practice examples gathered by the group.

The outcome of these initiatives will be the development of an approach in Scotland that guarantees equity of healthcare treatment for all people with profound and multiple learning disabilities - regardless of the extent and complexity of their needs.

Recommendation 43

That all stakeholders involved with people with PMLD commit to the implementation of the Scottish Quality framework for the delivery of invasive procedures, which will be launched in Autumn 2013.

Annual Health Checks

There is clear evidence to suggest that the provision of regular health checks for people with profound and multiple learning disabilities by their GPs would be highly effective in identifying previously unrecognised health needs and so reduce the health inequalities faced by people with PMLD¹⁰⁴. People with PMLD cannot communicate in conventional ways when they are in pain and often it is only a change in their behaviour that gives an indication that they are experiencing pain. Public health programmes such as breast and testicle self-examination do not take into account people who do not have the capacity to carry out such examinations. Gastro-oesophageal Reflux Disease (GORD) is another common health issue for people with PMLD. This is a preventable condition which happens when the acid in the stomach washes back into the bottom of the oesophagus. As a consequence, the lining of the oesophagus becomes chemically 'burnt' which can lead to other problems

People with PMLD are also susceptible to infections from helicobacter pylori which can, if undetected, lead to stomach cancer.

Annual health checks would identify health problems at an earlier stage and reduce hospital admissions.

Oral Healthcare

People with PMLD experience inequalities in oral healthcare. There are recent examples where people with PMLD are subjected to a general anaesthetic in order to carry out an examination or basic treatment of their teeth. The wait for treatment of this kind can be over 18 weeks in some NHS areas. This is not acceptable, especially if someone is in pain from toothache. Conscious sedation is a less invasive method to enable an oral examination when a person with PMLD does not comply with treatment. The recently updated Clinical Guidelines and Integrated Pathways for the Oral Health Care of People with Learning Disabilities¹⁰⁵ describes current guidelines.

Additional training is also required for medical professionals in the role of the Welfare Guardian and to make sure this role is recognised and respected. Many families have experienced situations where this has not happened. Depending on the powers that a Welfare Guardian has and the urgency of the situation, no medical procedures should take place without the approval of the Welfare Guardian.

Transitions for people with profound and multiple learning disabilities

People with profound and multiple learning disabilities go through a number of transitions during their lifetime. The most problematic of these being the transitions from child to adult services and from the family home to supported living.

Child to adult services

Moving from child to adult services is often described by family carers as 'the black hole of transition'. During their school years all of the needs of the person with profound and multiple learning disabilities, that is education, social and health, are generally met. Regrettably, this is not always the case once they move to adult services. Planning is not started early enough and recommendations from the Scottish Government state that such planning should take place no later than 12 months before a child leaves education¹⁰⁶. Research shows that there is a marked reduction in the availability of services, e.g. speech and language therapy, short-breaks, home nursing etc. once the person leaves full time education¹⁰⁷. Recommendation 11 of the Doran Review¹⁰⁸ acknowledges the need to consider the adequacy of existing legislation to ensure the transition from child to adult services for young people with complex support needs is properly coordinated, managed and delivered. There is also a need for independent advice and support for families where a daughter or son with PMLD is going through this transition.

Good practice

PAMIS Future Choices Project provides independent advice and support to the person with PMLD and their family through the process of transition from child to adult services. A Transition Planner and a Personal Communication Passport have been developed by PAMIS for each young person. These documents are person-centred and record all their specific needs and aspirations. The project collates information from education, social work and social care staff who are involved in the transition process to enable new health and social care professionals to get to know the individual. The project provides support to the whole family before, during and after the transition process.

Case study

Ann is a young woman with PMLD and complex health needs. She is approaching her final year at the community school she currently attends. Ann would like to attend college on leaving school and plans are underway to enable her to undertake a one a day week transition placement at the college. To ensure Ann gains maximum benefit from her transition year at college her future planning documents include a physical healthcare pathway that highlights the specialist equipment that she needs to enable her to maintain good physical health and the support required to access that equipment.

At school Ann currently requires to be supported by two Support for Learning Assistants for personal care and moving and handling to facilitate transfers to her standing frame, Samson chair or ladderback walking frame. Ann also has access to adaptive technology such as 'Big Mack' switches, switch adapted food mixer and touch screen monitor for PC. This equipment ensures that Ann has maximum opportunity to achieve both physical and intellectual access to appropriate learning opportunities.

Including a physical care pathway in her outcomes based planning process for transition means that the benefits Ann gains from using the equipment is recorded and the support she requires to access it is also recorded. The inclusion of the physical and intellectual benefits Ann gains from the use of this equipment is transparent. The recording of the support Ann requires to benefit from access to this equipment ensures that any future financial impact on adult service provision is also transparent. Including a detailed physical care pathway in transition planning documents that clearly identifies the benefits of the use of specialist equipment and the support required to access the equipment, will help ensure that someone with PMLD continues to benefit from physical and intellectual access to opportunities for further development entering adult services.

Moving from the family home to supported living

The majority of people with PMLD live at home with their families although a significant number have moved into supported living accommodation. It is very important for the long term success of supported living arrangements that family carers are involved at the planning stage to ensure that any move has a successful outcome.

Family carers know their relative best and their input is crucial to any discussions or decisions being made. Any package of care being considered must be person-centred in order to successfully meet the needs of the person with PMLD. It is also essential that planning is carried out in plenty of time to allow accommodation to be built around the needs of the people rather than adapting existing housing to meet the needs of the intended occupants.

PAMIS' consultation with family carers found that there was strong consensus that adult services should consist of both educational and leisure activities and that there is structure and continuity to these activities. There is a growing trend in some areas towards a timetable made up entirely of different leisure activities; such activities should, however, be meaningful. These principles are laid out in Make my Day¹⁰⁹ and are still completely relevant and applicable seven years later. The only change has been the method of funding these services.

Meaningful activities for people with profound and multiple learning disabilities

People with profound and multiple disabilities and their family carers are all too often excluded from community activities that the rest of us take for granted. However, with the right levels of support and commitment in health, education and adult services, people with PMLD have a great contribution to make to the lives of others and can lead fulfilling lives as equal members of the community.

Accessing Further and Continuing Education

There has been some progress with opening up college courses for adults with learning disabilities. This is a most valuable source of learning but, as a recent report demonstrated¹¹⁰, there have been many cuts to college places for students with learning disabilities.

There is an urgent need for colleges and their courses to become both physically and intellectually accessible to students with PMLD. Courses must also be meaningful and learning based, as defined by Scotland's Profound and Complex Needs project team. This project has made great strides in really listening to family carers and professionals supporting them and in ensuring they now offer courses that are accessible to people with PMLD. Dundee University has developed a resource for college staff on PMLD¹¹¹.

Accessing day opportunities

It is important that whatever day opportunities are on offer have a local base where the service users can have their personal and intimate care needs met safely and with dignity. Such a base enables the person to access activities in their local community while at the same time ensuring they also have available centre based activities such as multi-sensory storytelling, music and relaxation and, most importantly, a place to rest.

Good practice

Responding to the Scottish Government's Modernising Day Services consultation, South Lanarkshire Council committed to continue to offer services from centres for adults with learning disabilities. They developed a model where their day centres would become community buildings offering not only a service to people with learning disabilities, but a resource for the wider community. People with PMLD access these community centres as they are accessible environments and all include personal care areas, including Changing Places toilets¹¹².

Changing Places Toilets

The lack of suitable changing facilities in toilets in the community is one of the most restrictive practical problems preventing people with PMLD from going out and about and participating in everyday activities. This results in:

• families changing their daughters or sons on toilet floors, which is undignified and unhygienic
• heavy lifting by the carers with the potential to cause serious damage to their back.
• families opting to stay at home which increases isolation and lack of stimulation.

Changing Places is a UK-wide campaign with the aim of ensuring fully accessible toilets with hoists and changing benches are readily available. The campaign was started by PAMIS which has now joined forces with other groups to form the UK Changing Places Consortium.

The Consortium is led and chaired by PAMIS and Mencap and is working with four countries of the UK - Westminster, The Welsh Assembly, Northern Ireland Executive and the Scottish Government, led by Westminster's Department of Communities and Local Government. The consortium will develop a Voluntary Charter to which major providers and industries will agree to implement the provision of changing places facilities across the UK.

There are now over 500 such facilities in the UK with 84 in Scotland. The Consortium has also been successful in obtaining a standard for Changing Places facilities incorporated into the British Standards¹¹³. Architects use these standards and regulations when they are designing new public buildings.

Scottish Building Standards currently include some information about changing places toilets. At the time of writing, consideration is being given to strengthening this information for the purpose of further raising awareness of Changing Places toilets. The proposed guidance includes additional information about Changing Places toilets and acknowledges the importance of providing a network of these facilities throughout the country.

The Scottish Government and PAMIS will work together to ensure the Charter is implemented in Scotland.

Appendix 5 shows an example of a layout with essential equipment of a Changing Places toilet

Recommendation 44

That a sub group of the Learning Disability Strategy Implementation Group is set up to work together to increase the number of Changing Places toilets in Scotland to 100 by June 2015 using the conclusions and recommendations set out in the Scottish Government's report 'Changing Places Toilets'¹¹⁴ and by implementing the UK wide Changing Places Consortium's Voluntary Charter in Scotland.

Bereavement and loss for people with profound and multiple learning disabilities

For people with PMLD, the experience of bereavement is further complicated due to the barriers of communication that make it difficult for them to identify and respond to their grief. Research into the mental health of people with PMLD identified bereavement as a key factor in poor mental and physical health¹¹⁵. There is a clear need for more specialist resources that enable people with PMLD to understand that something significant has happened and provide a way of communicating about bereavement.

Good practice

To date, the PAMIS Bereavement and Loss Project has held a range of meetings with parents, carers and professionals from the Tayside, Grampian and Glasgow areas. The aims of these focus groups were to explore the experience of bereavement for people with PMLD and how they can be better supported. The resource pack and training materials which PAMIS is developing will share these experiences with other parents, paid carers and professionals. These resources are intended to inform and provide general guidelines and approaches that those supporting people with PMLD should use in ways appropriate to the individual and his or her experience and situation.This work is due to be completed by October 2013.

Many therapeutic approaches have been explored with people with learning disabilities, including storytelling. One such range of books, Books Beyond Words, tells stories using illustrations to help people with learning disabilities explore and understand their experiences. Those books which best illustrate bereavement include, 'When Mum Died', 'When Dad Died' and 'When Somebody Dies'.

Other storytelling methods include life story work, which allows the grieving person to share and explore aspects of their relationship with the person who is now gone (Read, 2007). PAMIS are now working collaboratively with international colleagues to develop stories for people with PMLD on the topic of bereavement and loss. It is hoped that these stories can also be used more widely with all people with learning disabilities.