The British Psychological Society welcomes the opportunity to contribute to the Joint Committee's inquiry into The Human Rights of adults with learning disabilities. The Society is the learned and professional body, incorporated by Royal Charter, for psychologists in the United Kingdom, has a total membership of over 45,000 and is a registered charity. The key Charter object of the Society is "to promote the advancement and diffusion of the knowledge of psychology pure and applied and especially to promote the efficiency and usefulness of members by setting up a high standard of professional education and knowledge".

  The Society is authorised under its Royal Charter to maintain the Register of Chartered Psychologists. It has a code of conduct and investigatory and disciplinary systems in place to consider complaints of professional misconduct relating to its members. The Society is an examining body granting certificates and diplomas in specialist areas of professional applied psychology. It also has in place quality assurance programmes for accrediting both undergraduate and postgraduate university degree courses.

  The Mencap Report, Death by Indifference (Mencap, 2007) highlights six tragic examples of institutional discrimination against people with a learning disability, and draws attention to a number of factors that may contribute to this situation. It is not our intention in this submission to reiterate or question these findings. Indeed, members of the Learning Disability Faculty of the British Psychological Society would be able to draw on examples from their own clinical experience that would support the themes and recommendations contained in the report.

THIS SUBMISSION SETS OUT TO CONSIDER

  1.  The need to pay particular attention to the human rights of people with the most complex needs, and the negative consequences of having additional/complex disabilities.

  2.  Practical steps to enhance the ability of this group of people to secure their human rights.

  3.  Examples of good practice.

PRIORITISING PEOPLE WHO HAVE THE MOST COMPLEX NEEDS

—    A common factor in the six case studies was that all the people had severe or profound learning disabilities, with little or no verbal communication. This level of disability provides an additional barrier that frequently prevents people enjoying their basic rights. The recent Healthcare Commission investigations into Cornwall, and Sutton and Merton NHS Trusts highlighted a correlation between increased levels of impairment and abusive practices (sexual abuse, physical abuse, deprivation of liberty and institutional practices). Research findings consistently draw the same conclusion that adults who have the most severe learning disabilities and complex disabilities, will also be the most at risk of having their human rights denied.

—    Despite the efforts to improve the quality of local services for people with additional behavioural challenges (DoH, 1993), there are over 11,000 people living in "out of area" placements. Challenging behaviour and additional diagnoses of autism, mental illness or other complex needs, are common reasons for such placements (Beadle-Brown et al, 2006). Consistent anecdotal reports indicate that individuals generally do not give informed consent to be moved to such placements. Most of them are likely to fall within the "compliant incapacitated" group. They are also at the greatest risk of being prescribed anti-psychotic medication to control their behaviour. The Joint Report by the British Psychological Society, Royal College of Psychiatrists and Royal College of Speech and Language Therapists (BPS/RCP/RCS&LT, 2007) highlights some of the restrictive practices experienced by this group and the steps that might be taken to address this.

—    If we can effectively ensure processes that protect the human rights of this most disadvantaged group, it follows that the same processes will protect people with less complex needs. A measure of our success in achieving the aim of supporting the human rights of all people with learning disabilities, should be how well we protect the human rights of people with the mostcomplex needs.

PRACTICAL STEPS WE CAN TAKE

  There are a number of practical steps that commissioners, service providers and others could take that would address some of these issues:

1.  Focus for Partnership Boards

—    The experience of many Partnership Boards is that the needs of the people with the most complex disabilities are not specifically highlighted. The service user representatives on many Partnership Boards are self advocates who have little direct experience of the restrictive lives that are led by people who have complex needs. It is suggested that Partnership Boards are asked to review their membership and business, to ensure that the needs of this group are fully considered and prioritised.

2.  Role of regulatory bodies (Healthcare Commission and Commission for Social Care Improvement)

—    In the absence of a specific National Service Framework for adults with learning disabilities, or dedicated NICE guidance, it is important that regulatory bodies pay particular attention to how services for the general population also take account of the specific needs of people with learning disabilities. It is encouraging to see the HCC audit of Assessment and Treatment Units and Respite services in the wake of the recent investigations, but it would be beneficial if the monitoring of Standards for Better Health asked explicit questions about how the standards are met in relation to people with learning disabilities.

—    There has long been a concern that the CSCI inspection process does not take adequate account of the outcomes for service users who have complex needs. There are no formally adopted care standards relating to best practice for the operation of registered care homes for adults with learning disabilities who have additional disabilities such as challenging behaviour. Adopting such approaches would help to give clearer guidance to providers about how they can ensure the achievement of the human rights of this group.

3.  Role of specialist community learning disabilities teams (CLDTs) for adults

—    The role of specialist CLDTs has not yet been clearly defined. The consequence is that teams in different areas may have quite different functions. Such teams are generally multi-disciplinary, but there is little consistency about how they operate. It is noticeable that both of the recent HCC investigations highlighted the inability of services to access adequate clinical support from CLDTs. It is recommended that the role of these specialist teams is clarified and they are sufficiently well resourced to provide assessment, interventions and support to individuals, families and services that care for people with complex needs (BPS, 2004).

—    One of the roles that these teams take on effectively in many parts of the country is working alongside primary and secondary health care providers to ensure that these services have the necessary skills to support people with learning disabilities in general health settings.

4.  Processes to avoid "out of area" placements

—    It is recognised that once people are placed out of area it is difficult to return them to their original communities (RCP/ BPS/ RCS&LT, 2007). Steps need to be taken to ensure that people are not unnecessarily placed out of area in the first place. Young people are increasingly being placed out of area, and adult services are then faced with the task of `bringing them home'. Local processes need to be established to review all requests to place people out of area. Guidelines and `good practice standards' for supporting people with learning disabilities who are at risk of receiving abusive or restrictive practices have been developed recently. These take the form of a self assessment audit for local services (RCP/ BPS/ RCS&LT, 2007).

5.  Total communication environments

—    Given that one of the most significant factors that contributes to adults with severe learning disabilities being denied their human rights is the difficulty they encounter when communicating with others in their environment, the development of "total communication environments" is a practical approach that can overcome some of the barriers. This approach enables people with limited verbal communication to express themselves emotionally, socially and functionally, and to be communicated with by others in ways that are meaningful to them. This includes supporting staff to make appropriate use of many non-verbal communications such as body language, facial expression, vocalisation, intonation, movement, gesture etc. In this way, people who support adults who have profound and multiple learning disabilities, can be "tuned into" subtle communications that can indicate distress, pain, discomfort etc.

6.  Guidance for people who support adults who have profound and multiple disabilities

—    The Profound and Multiple Learning Disabilities Network (PMLD, 2007) has recently written guidance about how to provide services for, and to support this group of adults. Their advice covers a number of practical recommendations, including ensuring that their needs are appropriately addressed at Partnership Boards; assigning key workers/case managers to individuals and their families; giving greater priority to carrying out health checks, person-centred plans, day services and staff training.

EXAMPLES OF GOOD PRACTICE

  We would like to highlight a number of examples of good practice that have been shown to enhance the ability of services to meet the human rights of adults with learning disabilities. These include:

—  Prevention and management of the use of restraints

  Many authorities have policies and procedures to reduce the risk of inappropriate use of restraints on adults with learning disabilities. One such is the Joint Learning Disability Service in Sheffield which has developed a city-wide policy to support people in ways that prevent the inappropriate use of all types of restraints. This includes a policy that has been adopted by all agencies, a central register of "restraints" that are deemed necessary, with a process for regular reviews, and a structure to respond to requests for advice and support.

—  E-learning for staff in acute hospitals

  Increasingly, staff in general hospital settings are being trained to care for people with learning disabilities who are admitted to hospital and who have additional needs that result from their learning disability (eg communication difficulties, increased anxiety, lack of awareness of procedures that are being used etc). Sheffield Teaching Hospitals NHS Trust is developing an extensive staff training curriculum that will be accessible on their intranet from July 2007. This will provide a wide range of easily accessed training packages for staff, addressing the social and health care needs of people with learning disabilities. It will be targeted at healthcare professionals within the general hospitals, and will build on the direct training that is already being provided to staff about how they can meet the needs of adults with learning disabilities within the acute setting.

—  Care pathways for people with learning disabilities within general hospital settings

  Sheffield Teaching Hospitals NHS Trust has agreed protocols on information and care pathways into many of their services, so that there are easily accessible routes for people with learning disabilities. These processes include:

—    Pre-assessment processes, such as longer appointment times or appointments at the beginning of clinics.

—    Funding agreements to provide extra staff who have experience of working with people with learning disabilities.

—    Inter-Trust guidelines on how services should be working in partnership to support individuals in general hospital settings.

—  Patient records in general hospitals

  Sheffield Teaching Hospitals NHS Trust and the Sheffield Joint Learning Disabilities Service Case Register are developing a system that will ensure that all people who have a learning disability, and are known to the Case Register, will be "flagged" on the general hospital's patient administration system. This will ensure that people with learning disabilities are identified at any entry point into the general hospital. Partnership protocols are being developed to ensure that care is effectively coordinated, and there is appropriate discharge and support back into the community.

—  Audit of processes within the general hospital setting

  Sheffield Teaching Hospitals NHS Trust has agreed 10 standards of practice and care for people with learning disabilities within the general hospital setting. Two audits have taken place, and a quality consultation is being carried out with regard to patient and carer satisfaction.

References

Beadle-Brown, J, Mansell, J, Whelton, B, Hutchinson, A and Skidmore, C (2006). People with learning disabilities in "out of area" residential placements 2: Reasons for and effects of placements. Journal of Intellectual Disability Research, 50, 845-846.

BPS (2004). Challenging Behaviours: Psychological interventions for severely challenging behaviours shown by people with learning disabilities. Leicester: British Psychological Society.

Department of Health (1993). Services for people with learning disabilities and challenging behaviour or mental health needs (The Mansell Report). TSO.

Mencap (2007). Death by indifference, London: Mencap.

PMLD (2007). Valuing People with profound and multiple learning disabilities. PMLD Network.

RCP/ BPS/RCS&LT (2007, in press), Challenging Behaviour: a unified approach (Report CR144), London: Royal College of Psychiatrists.

22 May 2007