1 Health Matters Claire Bates

2 Death by Indifference (Mencap, 2007) Treatment delayed/ withheld because individuals did not co-operate with treatment and therefore could not consent to treatment Many healthcare professionals do not understand the law around capacity and consent to treatment Delay in accessing / refusal of referrals to specialists Lack of pain relief – Issues surrounding communication / symptoms of pain and distress ignored

3 Basic needs neglected - A person was not fed for 26 days Lack of specialist knowledge and training within medical staff and healthcare professionals Diagnostic overshadowing - wrongly believe that a presenting problem is just a feature of someone’s learning disability Medical staff not listening to/consulting those who knew people best- staff/ family Health professionals rely inappropriately on their estimates of a person’s quality of life- reason to not pursue treatment

4 Confidential Inquiry into Premature Deaths of People with Learning Disabilities from April 2010 to March 2013 People with learning disabilities age at death was typically 30% younger than for those who do not People with learning disabilities experience poor outcomes compared to the general population in relation to healthcare People with learning disabilities have more difficulty in recognising ordinary health problems and getting treatment for them

5 Hospital Admissions According to Emerson (2012) & NHS (2013): 8 out of every 100 admissions at A&E are emergencies that might be preventable The most common cause of admissions for people with learning disabilities is convulsions and epilepsy 37% of deaths for people with learning disabilities were avoidable.

6 Complaint Number of admissions Percentage of total admissions Drug Overdoses (illegal drugs)99% Aspiration Pneumonia88% Epilepsy88% Mental Health88% Vomiting blood55% Chest infection44% Pneumonia44% Broken bones44% Overdose (suicide attempts)44% Breathing Difficulties33% Physical ailments33% PEG came out33%

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8 Examples of Negative Experiences A person was treated with antibiotics but as unconscious no fluids/food given for 5 days Discharged too early as hospital staff found it difficult to cope with their behaviour On occasion the doctors tended to address supporting member of staff rather than the patient and didn't explain thoroughly what they were going to do, there has been subsequent problems following the broken knee where the cast was incorrectly set resulting in further extensive work being required. But generally all hospital staff worked hard to support

9 We have to give support to people in hospital because of their communication needs, feeding/personal care/ unfamiliar environment and to ensure continuous delivery of care which hospital staff failed to provide because they are not experienced to work with people with learning disabilities Not good due to lack of understanding about the person needs around capacity Having to explain to them that the person had Dysphagia and need to have medication with hot food and they needed to sit at 80%. They had tonic clonic seizures but nurses said were not seizures

10 Positive Experiences Staff were supportive and understood the importance of listening to staff who knew her well Contacted the LD lead for the hospital and from then on in was a positive experience All were offered pre-discharge meeting to explain treatment received and findings and what extra support may be needed Nursing staff were understanding and empathic towards the person, family and staff

11 The 2013 Survey showed the range of specialist treatment accessed by individuals : Asthma clinic and nurse Learning disability dentist and dental hospital Cardiac clinic Chiropody Community nurse (to check PEG) Diabetic clinic and nurse Dietician Dysphasia Ear care Epilepsy clinic Lymphoma clinic Physiotherapy Psychiatry Speech and Language Therapist Thyroid checks Warfarin clinic Drug and Alcohol services Podiatry Psychology/ Counselling Occupational Therapists

12 Good Practice 90% of managers reported supporting people to see a dentist in the past year 71% of managers reported supporting people to attend the opticians in the past two years Almost all staff were supporting women to check their breasts, in some way, if this was in the remit of their support 95% of managers reported supporting people to have had an annual medication review 66% of managers reported supporting people to have an annual LD health review

13 Areas with more work required 49% of managers reported supporting someone ‘at risk’ of a heart attack 39% of managers reported supporting someone with diabetes who have poor blood sugar level control 40% of managers report supporting someone with poorly controlled epilepsy. 7% of people took part in exercise in the past week compared to 20% LD and 36% Non LD

survey raised concerns about people living independently when they are ill or are given medical appointments (especially at short notice) that fall outside of their scheduled hours of support they may have problems getting to the appointments or they may attend the appointment but without support. This can mean they may not get the medical help needed, or due to stress or their disabilities they may not properly understand the treatment or particular aspects of the condition.

15 Exercise and Weight Health & Exercise National Average LD National Average Non LD Choice Support Number of people supported to exercise once a week 20%36%7% Number of people overweight (BMI 25 or over) No definite statistic but is higher than 63% 63%24%

16 Capacity and Consent 46% of managers reported supporting applicable women to attend breast screening 34% of managers reported supporting applicable women to attend cervical screening

17 Reasons for not attending Breast Screening

18 Reasons for not attending cervical screening Reasons Number of responses which cited this reason Advised as un-necessary by GP/ Nurse as not sexually active4 Families/ GP have requested that this does not happen2 Lack Capacity4 People refused12 Would be unable to tolerate this procedure3

19 Questions What could be done to improve joint working between healthcare staff and support providers? How can access to health screening be improved for people with learning disabilities in relation to consent / capacity? What can we do to improve peoples’ experiences in hospital?