Learning disability and Cancer screening. Dr Jenni Lawrence. Lynne Taylor.

National Drivers. Improving and maintaining the performance of screening programmes is a Public Health England target and the government has specifically prioritised reducing inequality in uptake of national screening programmes as part of this[1]; The cancer taskforce’s strategy for the next five years emphasises the need for earlier diagnosis in order to improve survival rates and one of their key initiatives is to reduce variability of access to optimal diagnosis. Domain one in the NHS outcomes framework relates to preventing people dying prematurely and within this there are indicators about reducing mortality from cancer and mortality in adults with learning disabilities aged under 60 (Department of Health, 2014).

CIPOLD – 2013. People with LD die 16 years younger than the general population. 42% of these are thought to be preventable and avoidable. Attributed to delays in diagnosis, treatment and failure to provide adequate care. Over 1000 people with LD die prematurely each year through failure to provide adequate care. Genetic and biological reasons for some of these.

Cancer and LD. Low participation in screening programmes. Have comparable rates of cancer to the general population but the pattern of cancers may be different ( eg more gastrointestinal cancer) Overall proportion of deaths due to cancer among people with learning disabilities lower than the general population (12%-18% vs 26%), but specific high risk types: gastrointestinal cancer, leukaemia in children with Down’s syndrome. Incidence and pattern of cancer amongst people with learning disabilities is changing (partly due to increased longevity). Low participation in screening programmes. 50% die before aged 65 years.

North Yorkshire Taskforce Group - Learning disabilities and Cancer screening.

Who is involved? Learning Disability Service – Tees and Esk Wear Valley Trust NHS Scarborough and Ryedale CCG NHS Vale of York CCG NHS Harrogate and Rural CCG NHS Hambleton, Richmond and Whitby CCG Screening and Immunisation team – Public Health England North Yorkshire County Council City of York Council Also LD nurses at acute hospital trusts and hopefully representatives from the screening services.

Screening programmes ? Bowel Breast Cervical

Bowel screening Bowel screening using a faecal occult blood test is offered every two years for men and women aged 60-75 years. A bowel scope screening programme is in the process of being rolled out to all 55 year olds in England 0-62.5% (61.8%) Change to FIT

Breast screening Breast screening is offered once every three years to women aged 50-70 years old. The programme is in the process of being extended as a trial to invite women aged 47-73. 0-66%. (74.8%)

Cervical screening Cervical screening is offered once every three years to women aged 25-49 years and once every five years to women aged 50-64 years. Rates variable from 0-100% across the practices. ( in gen pop 77.4%)

Screening rates by practice.

This is for the general population. As a CCG we are better than the England average , however it is variable across the patch. For breast – Castle and Peaseholm below average. Cx screening everyone av or above Bowel – generally poor across britain so the ave and above ave rates still not good!

This is more interesting though….. Some screening rates going down Breast – Derwent and Peaseholm. Cx screening in Prospect road going down. Pleasingly bowel screening going up! ( but was pretty poor to start with!).

But what about those with LD?

LD and Cancer screening data – NHS Scarborough and Ryedale CCG 2017 Take with pinch of salt. LD and Cancer screening data – NHS Scarborough and Ryedale CCG 2017

Scarborough screening rates 2016 – 2017.   % Screening in LD population – SRCCG 2016 2017 Cervical 32% 28% Breast 45% 35%  Bowel 36% 40% Room for improvement. Data gathered 2016.

Why are screening rates so low in those with learning disabilities?

Barriers? Health care professionals Person with LD Carers Physical environment Systems

Annual health check Yearly review at GP surgery for those with LD Offered to all over the age of 14. Gain consent during this visit to share information with other health care professionals including the screening services. Opportunity to give information to people.

What did people say? Easy Read leaflets are really helpful. It was uncomfortable and I did not understand. What did people say? Don’t be afraid to talk about it. Easy Read leaflets are really helpful. Why it is important? Awareness of worrying symptoms and signs. Train (someone) to talk things through first. What the outcome of being screened might be? Make sure physically accessible. What happens during screening? Comments from the Health task force group. Understanding whose responsibility it is. Be clear that people understand.

Idealised cervical screening pathway….. Easy read invite to be sent to patient with easy read information Patient attends for pre-visit if needed to find out more about screening and what happens. Patient attends for screening having had reasonable adjustments made. If screening unsuccessful in primary care , patient is referred to Colposcopy clinic with referral made to Jo Blades to support. Screening successful! Patient gets results is easy read format. Use prior notification lists to share information…..

What do you think about a local pack?

Bowel screening Ensure all practices are aware of how to access easy read information to share with people at their health check and to encourage people to take up the offer of screening. Education to providers of care about how to help someone complete their bowel screening kit. Liaising with Hub about sharing information so that easy read invites can be sent out – hinges on getting consent to share information at annual health check.

Breast screening.

FASTER Care in diagnosis. F Fear of contact with health professional needs to be addressed pro-actively A Access – address barriers S Simple – keep language simple T Time – take extra time E Engage with other informants eg family and carers. R Relationship – work hard to build a trusting and respectful relationship C Complexity – view problems in multidimensional way A Act – minimise watching and waiting R Reasonable adjustments to time, investigations etc. E Enlist support of CLDT. BJGP article looking at the report and where care went wrong.

Resources https://www.gov.uk/government/publications/improving-healthcare-access-for-people-with-learning-disabilities http://www.necn.nhs.uk/networks/cancer-network/supporting-primary-care/cervical-screening-with-learning-disability-support-materials-for-sample-takers/cervical-screening-with-learning-disability-south-tees/ https://www.gov.uk/government/publications/cervical-screening-supporting-women-with-learning-disabilities/supporting-women-with-learning-disabilities-to-access-cervical-screening?utm_source=The%20King%27s%20Fund%20newsletters&utm_medium=email&utm_campaign=8725399_NEWSL_HWBB%202017-10-09&dm_i=21A8,570K7,IUTP2N,JZ8D8,1