Highlighting health inequalities for people with learning disabilities and/or autistic people

Hi everyone,

My name is Catherine and I’ve been working on a project about health inequalities in our communities and I thought I’d share here if that’s ok? I think this really ties into what’s discussed here on the Choice Forum.

‘Jasper Pickles Climbs Everest’ is an audio story which explores the health inequalities of autistic people and people with learning disabilities, and was co-created and voiced by people with lived experience. Through taking a walk in Jasper’s shoes as he takes an intrepid journey to the hospital, ‘Jasper Pickles Climbs Everest’ promotes further reflection on what you might to do help people like Jasper. You can listen to a captioned version on YouTube: https://youtu.be/pYX7ZjujIJk

I work for Made By Mortals, where we create audio stories like this that ‘bring lived experience to life.’ We work in partnership with health and social care organisations to coproduce our work, in this case it was MacIntyre, a charity who provide learning, support and care for people with learning disabilities and/or autistic people.

I’d really appreciate it if you could share it amongst your networks, or on social media so we can help bring about positive change for people who find themselves in a similar situation to Jasper.

Thanks so much for taking to the time to read this and do let us know what you think of the piece,


1 Like

Hello Catherine
just read your email below that brought back memory’s .
as a retired family carer for an adults with learning difficulty’s i was amazed to find out just how little doctors under stood about adults with learning difficulty’s what i did come across Was the policy one fits all as we all know this is not the case .
as a result to i agreed with other like minded carers to be part of a carer group working with UWE , UNVERICTY WEST THE ENGLAND health and social care tutors as an advisory group we were asked to look at the training schedules and were shocked to read so many misleading statement’s there was about ten of us all from different walks of life the common factor Was our knowledge was based on the lived experience after a couple of years i was proud of what i saw comming out of the students learning for the first time i was experiencing equality and what this should look like
for adults with learning difficulty.
my point i make is when dialing with people with learning difficulties please, remember Thay are people first, a good bed side manner goes a long way .
not sure this is what you are looking for however i thought it would be good to share
equality comes in many forms
take care

1 Like

Hello Catherine and Don, and others

Reading both your emails resounds with me too. I am a family carer and my 33 year old daughter with complex needs lives at home.

Like other families we have come to develop a deep understanding about our daughter through spending decades together.

Equality is never as difficult to achieve as in the right to difference and identity. Many of our sons and daughters are not able to speak and tell you about their likes, dislikes, needs, life stories, belonging etc. One size fits all generic training of support staff (the most important support at every day level) fails to reflect this. Both disabled people with complex needs and those tasked with caring for them in the future are given little time and resources to “transition” between home and support provider (care home, supported living). A friend of mine calls this “left luggage” thinking (shocking, isn’t it?).

People with complex needs are turned into commodities, aggravating lack of understanding and poor support. Care agencies “take over” as if they owned the person from the day they become “responsible” and families and friends can start being seen as “adversaries”, and pushed away. Their unique understanding of the person with complex needs is rejected, and the person “at the centre” robbed of much of their identity and therefore of much emotional security. Many families I know despair as they find it impossible to change this relationship and I know of rare examples to the contrary. But they exist :slight_smile: and it seems that this may be happening a little faster in support for people with dementia.

I would like to see a campaign to address the lack of acknowledgement (and resources) of the need to enable staff to get to know the person (with complex needs) and develop relationships through shadowing, chatting with families, and for families to be supported where needed to compile good and comprehensive profiles, picture books and histories (including a one page, a 5 page, and a long profile) to complement any care plan, health action plan etc. Much better practices are needed in the relationship between care providers and families/friends. They are often the “hard disc” for the persons life, needs, knowledge and belonging. Without this how can anyone understand, connect, communicate, build a relationship and support a good life to someone who cannot speak for themselves. It would be great to see a best practice guide (not a wish list please! or “I” wish statements)

Any thoughts, responses or ideas?
many thanks

1 Like

Hello ineshkta, your response to Catherine and Don really resonated with me.
Prior to my son moving out of the family home I was an active member of several carers groups and over the years have attended meetings, filled in endless questionnaires, sat on several committees and contributed to developing a hospital passport for our local city region all in the belief that I was making a difference for people who had a learning disability and associated needs.
My son is now 57 and for the past 20 years he has lived in a single person flat, one of 10 in a family commissioned supported living environment. The range of abilities among the 10 residents is diverse and includes complex learning/physical disabilities, autism, complex epilepsy, visual impairment, and some are non speaking. There is a part time in house manager, 2 senior support staff and about 30 support staff which includes full and part time staff and waking night staff. There is a strong family network, most of us have been friends since our (now adult) children, started school. We meet quarterly with our care providers local management team to discuss recruitment, reviews, inspections and general day to day issues. Most of the issues we raise as family members is around the shortage of staff, lack of consistency and continuity of support. We were led to believe that the care agency would build a core team of staff around each resident, according to their assessed needs but in all of these 20 years this has never materialised and it’s got to the stage where our loved ones and staff rarely know who will be supporting them on any given day. The staff rota system appears disjointed and doesn’t take into account when someone has a health or other appointment and more often than not, taxis are used while mobility cars sit idle because there isn’t a driver available. Although residents each have a key worker they often don’t work enough shifts with the person they are assigned to which makes it extremely difficult to build proper relationships and trust or to plan ahead. Basic generic training doesn’t meet the needs of those with the most complex needs and denies staff the opportunity of developing the necessary skills to provide true person centred support. Shadowing is rarely consistent nor followed through sufficiently enough to be effective or even safe. Despite the number of times we raise these issues with management, we are made to feel like adversaries, (an apt description by ineshkta) and our years of experience caring for our loved ones appear to account for nothing. My son and his neighbours do have life story books, drawn up before they left home, compiled by families and other people who knew them best, they are rarely read by new staff. All have care plans which have been stripped down over the past few years, resulting in some important information being lost. I for one would love to see a campaign that would ensure better and more appropriate training that truly meets the needs of our loved ones. To use a well worn phrase, I’d like to see parents/relatives becoming part of the solution rather than being seen as the problem, because surely, we all have the best interests of our loved ones at heart.

1 Like

Reading the comments that have been made regarding our family members that are supported by care agencies I find that I totally agree and especially regarding the comment that we are not looked upon as a valued source of information and a lifetime of experience. We are only valued if we are filling in the gaps - of which there are many - not enough effort is put into the statement Person Centred Supported Living

1 Like