Introduction

1. Introduction Peter Cardy – Chief Executive Macmillan Cancer Relief (2005) stated “that there are disturbing accounts of ignorance and neglect of cancer among people with learning disabilities. However, there are also inspiring stories of successful care and fulfilling ends to lives.”

2. What is Learning Disability ? Department of Health: A reduced ability to understand new or complex information (impaired intelligence) and reduced ability to cope independently (impaired social functioning) which began before adulthood and which has a lasting effect on development.

3. It is estimated that approximately 2% of the population have a learning disability • As defined by IQ below 70 on standard measures, with significant social impairment and onset before adulthood • This equates to: • 1.2 million with mild/moderate learning disability     • 210,000 with severe and profound learning disability • increase 1% per annum over next 15 years(7%of population by 2021) (Valuing People 2001) • An average GP practice of 2000 will have 50 people with an LD on its register

4. What’s the Point and What’s the Difference? • Because of improved paediatric healthcare there are more people with LD but often with more severe physical disabilities (+1% per yr). • PWLD have much poorer physical health, but are living longer, and are consequently likely to experience conditions which require palliation. • May have elderly family/carers who require pc (1/3 0f pwld live with carers 70+ yrs) and will require psycho-social support. • Long stay hospitals which previously helped care for many PWLD no longer exist and therefore these needs will need to be met in the community.

5. Healthcare of PWLD Generally • Many people do not access the same range and level of health services as others in the general population and have a poor experience of using health services (MENCAP 2004) • Death by indifference(2007)

6. When assessing and managing patients with a learning disability, professionals are often ignorant of: • • the signs and behaviours expressed by people with a learning disability, and in particular the clues that indicate distress in an individual • • the key role that carers play in interpreting distress cues • • the need to be more suspicious that the patient may have a serious illness, and be more proactive in intervening and assessing the needs of a person with a learning disability • • the issues around consent and capacity • • the difference between a professional’s opinion of a patient’s quality of life, and a patient’s opinion of their own quality of life • • the professional requirement to ask for help and/or refer on when faced with a novel or puzzling clinical situation • • the dangers of delaying or deferring action.

7. Healthcare of PWLD Generally • Higher healthcare needs but less access to healthcare services. • DRC reports that pwld are 4x more likely to die of a treatable illness • BBC News reports a recent research study which found that pwld are 58x more likely to die before age 50yrs • Likely, on average, to have 5 undiagnosed conditions at any given time esp. uti’s sight, and hearing • Higher levels of mental ill health ( 40-60% dual diagnosis 3x schizophrenia, 4x dementia) • 20x epilepsy • 3x respiratory deaths of ordinary population

8. People with a learning disability • Visit a GP as often, but are less likely to get a health check • Are less likely to access surgical specialties • Stay for a shorter time in hospital however on discharge require 4X the work load from a GP • Respiratory disease leading cause of death 46-50% v 15-17% • CHD 2nd highest cause of death 14-20% • Have a higher incidence of • Gastrointestinal cancer – 48-58% v 25% • Epilepsy – 22% v 0.4-1% • Dementia – 21% v 5.7%(over 65)

10. Cancer and People With Learning Disabilities • Have an increased risk of early death (Hollins et al 1998) • 4 times more likely to have a preventable death • Studies have shown 1 in 10 people with LD now die of cancer (Cooke 1997, Hollins et al 1998) • Cx Screening 17% Vs 85% (3% if at home) • Breast Screening 50 Vs 76% (17% if at Home)

11. Cancer & People With Learning Disabilities • DOH study suggests • Lower incidence of cancer (13.6% : 26%) • Perhaps a lower incidence of prostate, bronchus and breast • Significantly higher incidence of gastro- intestinal malignancies 58% of cancer deaths Compared to 25% for the general population ? Link with H pylori • Increased incidence of Lymphoma’s BILD 2001 • Down syndrome 10 -30 X ↑ Childhood leukaemia

12. Down’s Syndrome • Mean age of death in 1947 was 12yrs, now 80% live more than 50yrs • People with Down’s syndrome experience particular issues including premature ageing, 6 times as likely to die as ‘ordinary’ population • Increased mortality: 80% will now live in excess of 40yrs but 50-70% of these will have Downs related dementia-( includes epilepsy, sensory problems and muscle spasms dysphagia)

13. Cancer & People With Learning Disabilities • When cancer diagnosis then often late due to: a) issues related to care setting b) ‘over attribution’ of learning disability esp. By mainstream staff c) subjective quality of life decision making d) communication difficulties

14. Over attribution of ld • One of the areas of concern in healthcare is that mainstream professionals often ‘over attribute’ the ld – so that everything that is presented is seen as a part of the ld rather than the symptom of a serious illness e.g. cancer – this is even more likely in the case of dementia where most generalists would not be able to begin to think about how to distinguish the onset of dementia as opposed to the ld itself ( e.g. mini mental states exam).

15. Appropriate adjustments

16. Bradford Audit/Survey • Two Questionnaires sent • Supported accommodation, LD nursing homes, Residential Care Homes, Community teams for LD and Health Assessment Teams • 106 questionnaires sent out, 44 returned(42%) 22 patients identified who had palliative care needs in the last 3 years

17. Bradford Audit/Survey • 2nd Questionnaire sent • Palliative Care Services, DN’s • 25 questionnaires returned identifying 23 patients In all 40 different patients were identified 18 were still alive when the questionnaires were sent back 24 females 16 men ; All White British

27. Comments : Concerns about Care • Discharged from hospital with no confirmation of diagnosis/ prognosis and no follow up care offered • Discharged from hospital with no support from the learning disabilities team • Concerns over detection and screening – advanced disease at diagnosis • Concerns that change of environment may be causing some anxiety and agitation

28. Comments : Concerns about Care • The client had to go into a generic nursing home because there were insufficient nursing home beds for people with learning disabilities • Move to a nursing home as unable to adapt building to meet the needs of the patient • Mum main carer – wants to keep patient at home as long as possible and for him to die at home • The person was fearful of hospitals and Doctors (twice) • Trauma moving from own home to a nursing home

29. Comments : POSITIVE SUPPORT • Support form the district nursing team to dress wound following mastectomy • Excellent learning disabilities nurse, who with carers managed to keep him at home where he wanted to be • Lots of help from learning disabilities nurse • Hard to settle when in day care – wanted to wander • Supported to die at home as per family and carers wishes • Eventually went into a nursing home where he did not like it and kept asking to go into Marie Curie centre long term but hospice could not accommodate that

30. Comments : POSITIVE SUPPORT • Initially wouldn’t stay inside building even having the meals outside, after four weeks agreed to stay inside – important to acclimatise him to hospice • I know that the staff involved and the ladies family found comfort and pride that we has a team had made the right decision for this lady to live the final months of her life in her own home • Day services provided great support • Palliative care nurse helped to obtain blue badge • Good contact between palliative care & nursing home – keen to learn palliative care measures • Nursing home keen to keep person in home as long as possible • Nursing staff from nursing home with patient 24hrs until s/he died – invaluable

31. Comments : Consent Issues • Issues regarding verbal informed consent • Impact on staff – particularly on ethical issues re PEG feeding and withdrawal of treatment • There could have been more exploration of feelings if we had been allowed to tell patient of the diagnosis • Patient was not aware s/he was dying – Mother didn’t want him/her to know

32. Comments : Consent Issues • Understandable protection of patient by parents, not giving information • Parent tendency to shield patient • Mother of person not happy with them being in hospital, so they were transferred to nursing home • Consultant played God • More ill he became – more withdrawn & compliant

33. Comments : Support for Family and Carers • Parents were obsessive about son’s diet` • Grief reaction of parents – required lengthy counselling • Staff in supported accommodation were anxious about symptoms and about doing the right thing • Staff needed as much support, if not more than, the patient • Anxiety of staff involved – training required for staff to deal with patients care

34. Comments : Impact on Peers • The understanding of the other clients [with learning disabilities who lives in the same house] was an issue • The effects of illness & bereavement on other tenants in the house (who have a learning disability) • Impact [of illness] on other clients sharing the same home • Patient’s partner was ill and had low intelligence • Sister – also learning disabilities - prepared for patients death by social worker and bereavement officer

35. Comments : Communication • Did not formally introduce myself to patient due to lack of understanding because of learning disability • Very difficult to assess if the patient had pain or was distressed when they appeared agitated • Difficult to assess symptoms due to cognitive impairment • Professional staff (palliative care) not confident of talking to a person with Learning Disabilities • Concerns over what level to pitch information relating to diagnosis / treatment of patient

36. Comments : Communication • Patient unable to communicate, which made assessment of symptoms difficult • Family often seemed to speak on patient’s behalf even when he could answer • Makes ‘mooing’ sounds when content – other patients can be distressed by this • I relied on the staff team who knew the patient to be guided by her behaviour to assess symptoms • Staff familiar to the person are needed for communication and understanding • Unable to communicate with client (palliative care staff) but care staff know how to understand non-verbal communication of client

37. Conclusions • Small sample • Low response rate • Relied on Memory • Did not include people not know to LD or Pal Care services Therefore have to be cautious in making conclusions. However it did highlight some areas of good practice

38. Conclusions However some questions ? • Why the ethnic minorities not picked up ? • Only 5 of the patients known to both services ? need for more collaborative working • Relatively young population • Dementia patients had not died ? different model of support needed • Only one patient with Non Malignant disease known to the Palliative Care Services. Why?

39. Conclusions Qualitative comments show need for • Access to Health Care Services • Appropriate communication • Acknowledgement that those who know the patient well can communicate most effectively with the patient and can facilitate health care professionals assessment and diagnosis • Problems with patients coping with hospital environment/moving • Consent Issues,

40. Conclusions Qualitative comments show need for awareness of • Truth Telling or lack of, tendency for carer’s family wanting to protect the client • Impact on peers/friends (in supported accommodation etc) • Impact on Carer’s and Family : • Need for education of Health Care Professional in the above and learning disability generally. • Bereavement issues • Importance of effective collaboration between Palliative Care and Learning Disability Services.

41. We can address this by working in collaboration Primary and palliative care workers have an intimate knowledge of physical needs and expected course of terminal diseases, while learning disability nurses have an intimate knowledge of the client. They should all work together to share their expertise. (Tuffrey-Wijne 2002)

42. Bradford Network for Pallaitive Care for People with LD • 6 years • 2 audits • Conference • Education • Collaboration • Advice • Local Library/Resource • Regional Innovation Fund

43. Challenges for Palliative Care Services • Consent (mental capacity) • Treatment • Symptom Control • Placement • Communication • Bereavement Issues

44. Symptom Control : No Sense No Pain • Patient may not tell you but may show you • Identifying Distress is Key • Then try and identify the cause of the distress • What is Normal Behaviour (get a base line) • Use DisDAT tool (Disability Distress Assessment Tool)

45. Other Thoughts • Research tended to concentrate on the stress/burden/awkwardness of having a child with LD and not the benefits • ‘It’s a blessing’ or ‘a relief’ • Holllins : Double Taboo Disability and Death • Disenfranchised Grief • Disenfranchised Death • ‘The Handicapped Smile’ • Life History Book

48. Resources • National Network for Palliative Care of People With Learning Disabilities • http://www.pcpld.org/

49. I want the services to be there in the future for our Finn