1.  The Royal College of General Practitioners welcomes the opportunity to comment on the Joint Committee on Human Rights' call for evidence.

  2.  The Royal College of General Practitioners is the largest membership organisation in the United Kingdom solely for GPs. It aims to encourage and maintain the highest standards of general medical practice and to act as the "voice" of GPs on issues concerned with education, training, research, and clinical standards. Founded in 1952, the RCGP has over 26,000 members who are committed to improving patient care, developing their own skills and promoting general practice as a discipline.

  3.  We welcome the instigation of this Inquiry and hope that it will play a part in improving the safeguarding of the human rights of those with learning disabilities and ensuring that they receive fair and appropriate access to services. The majority of our response relates to access of healthcare services and particularly the primary care system, some of the points raised should offer insight into other areas of this Inquiry's remit. In outlining some of the barriers to appropriate access to primary care below and practical solutions to these, it is important to point out that the situation across health and social care is much improved from that in the recent past and that individual rights and preferences are better factored into decision making.

ACCESSING HEALTHCARE

  4.  Although many people with mild learning disabilities can take full responsibility for their health needs, some people with learning disabilities have cognitive and communication difficulties and those with severe or profound learning disabilities may have little or no capacity to indicate their healthcare needs. They may experience various symptoms but be unable to accurately describe them or express the severity of their discomfort.

CONTEXT

  5.  Because the current primary care environment design assumes that all are equally capable of accessing the system, those with severe learning disabilities are at a relative disadvantage. They must have a fair right to health provision, and if they are relatively deprived of this because of their intellectual disability, then it is incumbent upon the State to put in place additional facilitatory systems to compensate. Social services and specialist clinical services do help to address the access imbalance. This issue has been identified in Valuing People[46] and confirmed by the recent Disability Rights Commission Formal Investigation report.[47] The evidence of additional clinical need and of the effectiveness of health checks in meeting this is in our opinion overwhelming and convincing[48], [49], [50]. As this requires additional training, effort, time and skills by primary care, the State should ensure that this is appropriately resourced, in addition to duties placed on bodies via disability equality rights legislation.

BARRIERS TO ACCESS AND IMPROVING ACCESS

  6.  Carers of adults with learning disabilities, either family or paid professionals, may on occasion choose not to seek medical help for them through ignorance or through the collusion of institutional complacency, or by the attribution of atypical symptoms to the learning disability rather then the actual proximate medical cause(diagnostic overshadowing). It is even possible that some significantly disabled patients may be deliberately kept from face to face consultation with a medical professional and in this situation an infringement of their human rights may be occurring.

  7.  For example, they could be being underfed. This might never come to light unless they were weighed regularly, this requires structured health monitoring. We believe that those who cannot take responsibility for their health should have facilitated access to healthcare, as a right. A pragmatic way of achieving is to offer regular appropriate health checks to such patients. Avoidance of such appointments without good reason, by the responsible carers, for such very disabled people might suggest an infringement of human rights. Because these patients cannot compete on equal terms with non-learning disabled patients, and because their effective care requires extra time, there must be proactive intervention systems in place to ensure that such patients' clinical needs are addressed. Structured health assessments should be used and facilitated access to the same services as the rest of the public use should be offered. Primary care services should be accessed by all people with learning disabilities, as almost all people with learning disabilities are now registered with a GP. This should be monitored and assessed.

  8.  Use of designated key workers, acting as advocates for adults with learning disabilities are a good way of monitoring and ensuring that these measures take place. In the case of access to healthcare it is important that medical expertise is also sought in decision making.

  9.  Advice and support should also be taken by public bodies responsible for care from NGOs such as Turning Point, Scope and Mencap. These organisations have a great deal of knowledge in balancing care with human rights and facilitating access to services for those with learning disabilities.

SPECIFIC ISSUES

  10.  We are concerned, that in some local areas, "nursing homes" with people with complex and severe disabilities are changing status to "residential homes". Though the stated reasoning for this, ostensibly the social model, is a good one in itself the practical reality is that is can lead to the withdrawal of clinical assistant sessions.

LEGISLATION

  11.  The right of fair access for people with learning disabilities is acknowledged in National Minimum Standard 19.4 (2001) of the Care Standards Act,[51] which states that young adults in residential care should be offered a minimum annual health check which includes vision, hearing, medication review and attention to illness/disability unrelated to the primary condition. Some residential care homes are ensuring that their young adults do receive the health check, while others are not. Access needs to be consistent.

  12.  I acknowledge the contribution of Mrs Ailsa Donnelly, Dr Graham Martin and Dr Charles Sears towards the above comments. While contributing to this response, it cannot be assumed that those named all necessarily agree with all of the above comments.

May 2007

47   www.drc-gb.org/PDF/mainreportpdf_healthFIpart1.pdf Back

48   Baxter, H et al 2006 BJGP Previously unidentified morbidity in patients with intellectual disability vol 56:93-98. Back

49   Cooper S A et al Improving the health of people with intellectual disability: outcomes of a health screening programme after 1 year. J Intell Diasb Res 2006, vol 50 667-677. Back

50   Health Needs Assessment Report: people with learning disabilities in Scotland, NHS health Scotland, 2004. Back

51   National Minimum Standards for Care Homes for Younger Adults, Note, Dec 2001; section 23(1) of Care standards Act 2000. Back