Derbyshire County PCT Healthcare Commission Declaration 2008/9

1. Derbyshire County PCT Healthcare Commission Declaration 2008/9 Comments fromDerbyshire Learning Disability Partnership Board working in partnership with the Derbyshire Learning Disability Partnership Board Comments

2. Background Information • In April 2008, Derbyshire County Council working with partner organisations launched the ‘Be in Control’ charter for people with learning disabilities. • Be in Control was written by people with learning disabilities and their family carers. • ‘Be in Control’ is the Derbyshire Learning Disability Partnership Board campaign. • It aims to transform attitudes and expectations about the way people with learning disabilities are supported by all public and community services. • It says that people with learning disabilities “should have help to stay healthy”. Derbyshire Learning Disability Partnership Board Comments

3. Background Information • The Scrutiny Committee is supporting the work of the Derbyshire Learning Disability Partnership Board by looking at the way the NHS is implementing the 10 recommendations of “Healthcare for All” the national inquiry report. • The Good Health Group of the Partnership Board has nominated people with a learning disability and family carers to join the Committee Review Group. • Evidence has been gathered from: • Meetings of Local Partnership Boards • Meetings with people with learning disabilities and family carers • Questionnaires HEALTHIER COMMUNITIES IMPROVEMENT and SCRUTINY COMMITTEE REVIEW ACCESS TO HEALTHCARE FOR PEOPLE WITH A LEARNING DISABILITY Derbyshire Learning Disability Partnership Board Comments

4. Partnership Board Evidence Information/views/key messages gathered in various ways including: • 165 forms returned so far • 80 people at Choice & Control Taskforce meeting • 30 people County Advocacy meeting Derbyshire Learning Disability Partnership Board Comments

5. Key Themes • People with a learning disability will be easily satisfied by the treatment they receive and they are more vulnerable to nice people providing sub standard services. • Health services often rely on family carers (and other supporters) but too often don’t consult with or properly involve them. • The evidence gathered so far by the Partnership Board suggests that whilst there are examples of good practice and many people say they are treated well, there are too many examples of poor practice. • Specialist learning disability Health services are providing good support to other Health services. • Best practice needs to be supported by a comprehensive assessment of Health services, clear action plans and systematic management leadership at all levels to make sure services make reasonable adjustments for everyone. There is a wide range of work that Derbyshire County PCT needs to do. Derbyshire Learning Disability Partnership Board Comments

6. People with a learning disability commonly report that they like… • Doctors • Nurses • Dentists • Chiropody • Information • Explanations • Good manners • Being spoken and listened to • Having carers involved. • Being comfortable Derbyshire Learning Disability Partnership Board Comments

7. People with a learning disability commonly report they did not like… • Waiting • Cancellations • Unhelpful staff • Bad manners • Not being given information • Jargon ‘gobbly gook’ • Fitting into systems • Electronic “booking in” • Not knowing who to ask • Complaints systems • Poor disabled car parking Derbyshire Learning Disability Partnership Board Comments

8. Health Services did not do well about…… • Easy to understand leaflets/ information • Telling people how long appointments last, and what happens next. • Sending letters to patients. • Signs • Consultations, forums, and patient public involvement. • People do not know about PALs service Derbyshire Learning Disability Partnership Board Comments

9. Health services did not do well about….. • Assessments and Planning for discharge. • Consent. • Safety of medicines. • Flexibility, doing things differently to help one person. • Telling people about what they can do to help people with disabilities. • Looking after family carers. Derbyshire Learning Disability Partnership Board Comments

10. Good things Good things being done by Health services we have identified so far: • Special Hearing Clinic (DRI) • Free meals for carers (QMC) • Midwife (Derby City) • Good explanations (A&E Chesterfield Royal) Derbyshire Learning Disability Partnership Board Comments

11. Most Health services need to give more attention to reporting safeguarding issues (C1) Medicine labels are too small and information is not good. (C4d) Audit at the DRI shows some adjustments being made but not all departments responded. (C5) Good working between Derbyshire County Council and Health services dedicated to learning disabilities. (C6) Hospital discharge procedures have problems.(C6) Carers are not asked about ‘reasonable adjustments.’(C7) Quality of life judgements still appear to happen (C7) Linking to the standards Derbyshire Learning Disability Partnership Board Comments

12. Derbyshire Community Health Service has formally supported the “Be in Control” charter campaign. (C7) People with learning disabilities contributed to Disability Equality plan at events in Staveley and Bakewell (for all Health Services). This is not acknowledged. People have not been asked about progress. (C7) Green Light toolkit needs to be fully implemented by commissioners to update protocols and improve direct access to adult mental health services. (C6) Evidence of DNR included in records wrongly. (C9) Out of hours service cannot access GP records. (C9) Linking to the standards Derbyshire Learning Disability Partnership Board Comments

13. Mental Capacity Act training is mandatory in mental health and learning disability services (C11a) (C13b). Little training in learning disabilities for most Health services (C11a). We have not been informed of anyone taking part in research (C12) Dignity and respect is important to people. Most workers described as being nice to people. Some evidence across all Health services of people who feel they are not treated with respect. (C13a) Linking to the standards Derbyshire Learning Disability Partnership Board Comments

14. Accessible complaints procedures – special LD services have improved complaints procedures. Other Health services have not. (C14a). People do not know about PALs service. (C14) Uncertain as to procedures for supporting food choices. Some evidence that carers have taken in food to Hospital (QMC). Carers relied upon in all hospitals. Evidence that not enough is done to look at nutrition and dysphagia (C15). Accessible information is patchy across services, most do not produce easy to understand information, good examples from Staveley Ward (Chesterfield Royal) and DRI. (C16) Linking to the standards Derbyshire Learning Disability Partnership Board Comments

15. People are not involved in patient forums, reading panels, views are usually sought via internet and misses most people with learning disabilities. One example of people being invited to consultation – Bakewell area. (C17) Signs mostly for people who can read, New Health centres have not used symbols. Choose and book difficulties. (C18) Some reports of people being frightened in Hospitals. Suggest this is not feeling safe. No evidence of assessments asking what is important to the person. (C20) Some partnerships with LD services but tend to be short- lived and may serve the purpose of ticking a box for the organisation. Good example Diabetes Specialist Nurse. Linking to the standards Derbyshire Learning Disability Partnership Board Comments

16. Assessment of “Healthcare for All” by Derbyshire County PCT and action plan required is not visible. Derby and Sheffield Hospitals have shared response to assist Derbyshire review. Nothing yet from other NHS bodies (C22) Support from Public Health County/ City for Partnership Board Couch Potato healthy living campaign by acting as ‘judges’.(C23). Joint working with LD services for Breast Screening from Derby Hospitals (C23). Joint work with LD services on Cervical & Bowel cancer (C23) Inclusion in Derbyshire within Chlamydia screening work (C23) Linking to the standards Derbyshire Learning Disability Partnership Board Comments