Health matters

Health screening is vitally important for everyone but are all people with a learning disability getting the screening they should have?  Looking at recent research of deaths of people with an LD you can easily believe they are not.  Research showed that ladies with an LD live 29 years less that the general population and men 23 years less.

Jean, Ed and Lynn are members of the Mencap Trust Company Board.  They set the priorities for Mencap Trust.  They help the Trust Team think about how we can help people have good access to health services. 

Jean Spiteri

Jean is a qualified nurse, and specialised in palliative care.  She is co-chair of North Lincolnshire Learning Disability Partnership, a role she shares with 2 co-chairs, both adults with a learning disability. Jean is passionate about supporting people to campaign and speak for themselves.  Jean's daughter, Karen, has a learning disability.

Health screening can make the difference between life and death.  Everyone with an LD should have an annual health check.  But I suggest that a routine health check is not adequate.  Of course things like blood pressure, blood samples, weight check and amount of exercise taken must be recorded, but there are vital other checks too. 

How many ladies with an LD know how to check their breasts properly and men their testicles?  These are things that a health care professional should be checking at a health screening.  Early detection could save their life.

At health checks, when weight is recorded, if the patient is overweight are they referred to a weight management programme?  Are they directed to an exercise programme if they lead a sedentary life?  Importantly, are these followed up to make sure that progress is being made?

Emotional well-being is also very important.  People with an LD can become depressed and have mental health issues the same as every other group in society.  Is behaviour being dismissed as the person’s LD?  Does the annual health check cover mental health?

If a person fails to attend a health check is this followed up?  Can the person read appointment letters?  Is transport difficult for them?

Cervical screenings for ladies who are sexually active is vital.  It’s not a pleasant procedure but if explained properly, information given in an easy read format and support given to attend, then there is no reason for this not to be done.

Breast screening, mammograms, which start when a lady is around 50 years old, again, not particularly pleasant but early detection of breast cancer has excellent survival rates.

When people reach age 60 they will routinely be sent a bowel testing kit.  I think the majority of people with an LD would need some help and guidance on taking the three samples that are needed.  The survival rates of early detection of bowel cancer are extremely good, so doing the test is vitally important.  Having to help someone take samples of their faeces may not be what most people would want to do, but failing to do it could put a life at risk.

Hearing and sight tests should be done on a regular basis, probably every two years.  Some people with an LD don’t read, so failing eye sight may not be obvious; the same with deafness.  Does the person not hear what is being said to them, or is it being put down to them not co-operating?  

The NHS started the Accessible Information Standard in 2016.  There are very good sites that have easy read leaflets covering all aspects of health.  The information available needs to be used.

I believe that, with careful and sensitive explanation, every type of health checks can be given.  The age of death for people with an LD is never going to improve unless health screening is taken seriously by everyone within the health and care profession.

Lynn James-Jenkinson

Lynn is the Director of North West Training and Development and CEO of Pathways Associates CIC. Both organisations support people with learning disabilities and their families to strongly influence planning of local authority and health services. Lynn is mother to 6 children, one of whom has a learning disability. She is also a qualified social worker with expert knowledge on the rights of people with learning disability.

Going at Emma's pace made the difference.  My daughter, Emma, is now 15 and six months ago she had a tooth out, at the dentist’s.  That may not seem a story worth of two minutes of your time but trust me, my chest burst with pride that evening.  Pride in her and pride in our local dentist.

Emma has, for a long time, been very, very frightened of medical appointments and needed lots of reassurance and support from her dad, sisters, brother and I.  At times it felt like we were wading in treacle and not achieving any progress. But with consistent, kind and sensitive support, at her pace, we achieved what felt like a miracle when, at a routine check-up the dentist said “You need a little tooth to come out Emma” and she said “OK”.

We spent years, really years, working with the dentist who never gave up, and a family friend who helped Emma develop some strategies based on mindfulness-based stress reduction breathing techniques.

We visited daily at one point and the dentist would come out to the car and say “hi”.

Slowly Emma managed to control her anxiety and get out of the car, and over time went from that to going to the waiting room, then to the dentist’s room, then to sitting in the chair, then smiling and showing her teeth.

Emma is proud of herself, being a fabulous big sister, and always going first to show her younger sister its fine.

She’s also dealt with the dentist changing and is happy to go to the dentist. 

What made the difference?

  • No one gave up
  • Emma lead the pace
  • Everyone had high expectations and expected that eventually she would do it
  • Reasonable adjustments were made by the dentist to achieve the long term goal
  • Everyone worked together to a common goal that we all understood

Ed Wadsworth

In November 2014 we had the good fortune to recruit Ed Wadsworth to the Mencap Trust Company Board. Ed is passionate about making a difference to the lives of people with a learning disability. He was unable to make himself clearly understood until he was in his 30's. Ed has set us very high standards for communication with our beneficiaries.

I do all I can to look after my health.  I eat well and take regular exercise.  Swimming in winter, and using my manual wheelchair in summer keeps me fit and gives me the upper body strength I need to be able to transfer myself from my wheelchair.  This means I can be independent, which is very important to me.

I don’t like hospitals.  I have been in hospital often enough already.  If my doctor told me I had to go to hospital I would hate it.

My doctor is very good.  She always asks me what she can help me with.  I know that she will answer my questions and give me good advice.

I know that health screenings are really important.  They mean that a problem can be picked up early and treated.  But asking a question can be scary.  The answer may be something I don’t want to hear.

It takes courage to ask your doctor some questions.  The answer could upset you.

I have a way to pluck up my courage so that I can ask questions.  I find somewhere quiet and I give myself time to think.  I think about why it is important to ask the questions.

My support staff go to doctors' appointments with me.  I work out the questions I want to ask.  My support staff take notes of what the doctor tells me, so we can talk about it later. 

I always have my annual health check.  Next year I am 50.  I am going to ask my doctor about screening for prostate cancer.

I look after my health and it is even more important than ever.  Jane and I are getting married, and we want to live a long and healthy life together.