Draft Three Year Strategic Plan for Assessing and Encouraging Improvement in the Health and Healthcare of Adults with Learning Disabilities 2006-2009
Response prepared by Keith Smith,
Chief Executive on behalf of the
British Institute of Learning Disabilities
Campion House, Green Street,
Kidderminster, Worcs. DY10 1JL
31st January 2006
1. Have we missed out anything that is very important?
• BILD would like the acknowledgement that the label “people with learning
disabilities” covers a wide range of abilities and disabilities. This includes
individuals with sensory disabilities and with profound and multiple
disabilities whose needs from healthcare are not directly acknowledged in the
strategy. In addition, individuals who require forensic support need specific
mention and their needs addressing.
• Providing “accessible” information and in particular complaints leaflets is to
be welcomed. However, this will still not meet the needs of many people with
learning disabilities. BILD emphasises the importance of “good advocacy on their
behalf” and the importance of ensuring that advocacy services are required that
are securely and robustly funded. This is required to ensure that real change
will occur – otherwise it will remain too easy for health care providers to
overlook or ignore the needs of people with learning disabilities.
• BILD has contact with a network of self advocacy groups who could provide the
Healthcare Commission with their own experiences of healthcare on an ongoing
basis. In addition, we believe that the best training for mainstream healthcare
staff should be delivered by people with learning disabilities themselves.
• A greater emphasis should be placed upon the need to support and listen to
family carers, as they are often in the position of knowing their family member
best especially if there are communication challenges.
• Training for mainstream healthcare staff is crucial, as the quality, knowledge
and experience of the staff determines the quality of the service provided. Our
feedback from people with learning disabilities and family carers is that in
acute general hospitals, nursing and medical staff can have negative attitudes.
• Although it is important to check the quantitative information such as how
many health action plans and health checks have been completed, it will be
important to check out the effectiveness and collect qualitative information. We
would not want this process to be simply about ticking boxes, but about really
changing the health of people with learning disabilities for the better. We
would welcome the opportunity for people with learning disabilities to be
encouraged automatically to attend for screenings.
• BILD is optimistic that the goal in relation to the three year plan is to
provide joined up services. It is anticipated that the new White Paper will
provide an opportunity for providers and regulatory bodies to work effectively
together to deliver the much needed improvements for people with learning
disabilities.
• Dental services and screening for women are two areas that we would want to
become priorities for improvement.
• BILD believes that communication is a fundamental human right and that this
should be a high priority in any discussions about providing person centred
services for people with learning disabilities. The plan’s emphasis on providing
accessible information is to be welcomed but this will still not address the
information needs for all. We believe that training for mainstream healthcare
staff must address communication in relation to working with people with
learning disabilities.
• We believe that the use of psychotropic medication for people whose behaviour
is seen as challenging should be reviewed and checked. It is our belief that it
is sometimes prescribed when there is no evidence base and very adverse side
effects.
• Accessibility to services should address issues of physical access and the
timing of appointments at the GP’s surgery.
• There is an ongoing need to review and monitor the support and healthcare
provided to people who have been resettled from the long-stay hospitals.
• The use of physical interventions and restraint in healthcare provision should
be reviewed as part of the ongoing work of the Healthcare Commission.
2. Is there anything else you want to tell us?
• People want staff who are approachable and sensitive to their individual
needs; who give them the time they need and who listen well.
• “Choice“ should be more explicitly stated in the “Action” column of the full 3
year plan and not just in the “outcome” column. Ways of facilitating and making
choice happen would be helpful as part of the plan – it would be good to include
measures that identify and disseminate ways of making choice possible, and that
monitor the extent to which this is being done effectively.
• The Healthcare Commission would benefit from working with organisations with
expertise such as self-advocacy groups and BILD to develop the greater
involvement of people with learning disabilities and family carers. We would be
very keen to work on the outcomes of the recent investigation in Cornwall in
which we participated and the future audit of health services for people with
learning disabilities.
• The development of a tool to review inpatient services for people with
learning disabilities must include finding out the views and opinions of people
receiving the support.
• We actively support the creation of a group of people with learning
disabilities and carers who will be active, trained and paid to work alongside
the inspection and investigation teams. BILD would be more than willing to
assist the Healthcare Commission in supporting and identifying such individuals
and doing joint work with inspectors and service users.
• Even if the Healthcare Commission website is made easy to read and look at, it
must be remembered that many people with learning disabilities and their carers
may not be able to access a computer.
• In relation to the completion of patient surveys, many people with learning
disabilities will need support to complete them even if they are in a format
that can be more easily understood.
• BILD is pleased that one aim will be to look at the standards which apply to
the independent healthcare sector – we have concerns about the growth of this
area of support that may replicate traditional “hospital” provision and
dissuades local commissioners from developing local specialist services if
required.
3. Ideas or suggestions to make our easy-read things better
• People’s individual stories with pictures (social stories) would be helpful
for people with learning disabilities to understand.
• More pictures that are better placed to assist the link between pictures and
text.
• The use of asterisks do not help. It is better to introduce and explain
difficult words at the beginning. People will actually ask if they do not
understand, especially if they are used to being consulted. Effective supporters
will be sensitive to any likely difficulties.
• One of our Council members has suggested that the Healthcare Commission should
network with People First organisations to help make things easier to read and
understand (e.g. People First Lambeth).
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