Written by Clare Melvin
In addition to the Complex Needs series, the Greater London LD Community of Practice will also run a blogs focusing on issues affecting women with learning disabilities. Although the blog has previously discussed some topics relating to women (e.g. Perky back in August), these posts will look at specific areas in more detail and provide signposting to resources and guidance. Don’t worry – we’ll be covering men and transgender issues in the new year!
This week will examine breast screening and future blogs in the Women with LD series will include the menopause, forced marriage and domestic violence.
If you would like start a discussion about any of the issues in this week’s blog or suggest other areas for discussion please join the Greater London LD facebook group or tweet us at @glldcop.
Breast Screening and Examination.
Women with a learning disability who are eligible for breast cancer screening are the least likely to attend. Information from 2015 and 2016 show a decrease in breast screening by women with, and without a learning disability, for all ages. However, the largest decrease was found in women 65 to 69yrs with a learning disability, decreasing from 54.6 per cent in 2014-15 to 52.3 per cent in 2015-16.
Since 2017, NHS England have been running a campaign to increase awareness and support for women with learning disabilities to access lifesaving breast screening. In speaking with women with learning disabilities, health and social care professionals and families and carers, a lack of understanding, embarrassment or fear, have been identified as some of the reasons for low levels of attendance and a decreasing rate of uptake.
The Campaign began in Cornwall and you can watch this short video which highlights what they did to address the decreasing numbers in women with learning disabilities attending breast screening. You’ll see that the work they undertook has seen the number of women with learning disabilities attending breast screening to increase to that above other women (without learning disabilities). Watch the video here and you can also access the Government’s easy read guide to breast screening through the NHS England page.
Breast Cancer Care provide guidance for supporting women with learning disabilities to check their breasts. They have a guides for taking care of your breasts and examinations as well as guides for having a mammogram and what certain results may mean (‘going to the breast clinic’).
A booklet to promote breast health in women with learning disabilities has been produced by University of Ulster and Compass Advocacy. The booklet provides an easy-read guide on what cancer is, risk factors and taking care of your breasts and well as pages to help self-care. This great little resource is free and available here (or click on the picture below).
And finally, to add a little fun to your feel, Coppafeel ran a shower hijak campaign creating amusing and inventive reminders for your shower or bathroom prompting you to check your breasts (order your free shower sticker here!) They also offer a text reminder service for when to check your breasts. Find out more and visit their website for more information on breast examination.
LD in the News
- Read Rashmi Becker’s blog on the Gap between disability policy and practice and the role of the support worker. Rashmi has over 20 years of experience working for central government, European Union institutions, and national learning disability and autism social care providers. Her research at the University of Cambridge explores “why does government disability policy fails to recognise the significant role of support workers in the lives of people they support?”.
- Two in five people with learning disabilities not diagnosed in childhood. Institute of Health Equity director says society is ‘failing to be fair and supportive’. Read the Guardian article here.
- If you have the time, this week’s Long Read focuses on negotiating the labyrinth of children’s services, particularly those special education needs – ‘A wall built to keep people out: the cruel bureaucratic maze of children’s services‘.
- Read Gary Bourlet’s (named on Disability Power 100 list) thoughts on social care and what he thinks are most important having read the CQC State of Care report. Read here.
Events + Conferences
- National Autistic Society Pathological Demand Avoidance Conference (PDA), 20th November 2018, Manchester. The conference will provide professionals and parents with clearer understanding of PDA, and essential strategies for education, management and communication. PDA (pathological demand avoidance) is a behaviour profile within the autism spectrum which affects boys and girls equally. People with PDA need different amounts of support depending on how their condition affects them. The main difficulty is avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. However, they generally have much better social communication and interaction skills than other people on the spectrum, so can use those skills to disguise their resistance through common avoidance behaviour. Read more about the conference and book your place here.
- Learning Disability Today Conference, London. The annual event welcomes all with accessible talks consisting of three main topic streams (1) Autism & Learning Disability, (2) Health & Welbeing, (3) Policy & Practice. The CPD certified conference is being held at the ILEC Conference Centre, Earls Court, on 28th November 2018. Find out more and book your place here.