We caught up with Sarah Ormston who is Health, Dementia and Wellbeing Manager at MacIntyre. Sarah provided us with more detail on the work MacIntyre carry out supporting children, young people and adults who have a learning disability and/or autism and introduced their exciting new accessible version of the NDAA’s own Dementia Statements. Also included in the interview are MacIntyre’s future plans and their involvement in our Dementia Seen and Heard campaign.
Can you tell us about MacIntyre and what your role involves?
MacIntyre was established in 1966 by Kenneth Newton Wright, the parent of a disabled child, MacIntyre has grown to become a leading national charity, highly respected and committed to setting standards and increasing choice. MacIntyre provides learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Our diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.
To put it as simply as possible, my role at MacIntyre is to oversee the Health, Dementia and Wellbeing of all people we support; there is a long list of things this does involve but to give a flavour, I have highlighted some aspects of my role:
- Sharing knowledge and best practice/guidance identifying current and future trends relating to all aspects of Health, Dementia and Wellbeing using best practice/guidance to make suitable recommendations for changes within MacIntyre.
- To ensure that all aspects of Health, Dementia and Wellbeing are represented in staff learning programmes with the aims to maintain or improve the health of people supported by MacIntyre, in conjunction with internal MacIntyre teams.
- To provide advice and guidance to staff on health, dementia and wellbeing for people supported by MacIntyre where required.
- To guide people supported within MacIntyre to have a healthy lifestyle and access appropriate services to meet their health needs.
You recently launched an accessible version of the NDAA’s Dementia Statements, how did these come to being created?
The Dementia Statements are such a powerful set of statements supporting the voice of people living with dementia and their carers. The Dementia Statements successfully highlight what is important for those people, giving a platform to ensure that their voices are heard and embedded throughout is this strong sense of empowerment and Rights. Last year I attended and presented at the NDAA Annual Conference, where the Dementia Statements were launched, and I remember sitting amongst the audience feeling a real excitement and buzz that people living with dementia and their carers have reworked the new ‘We’ statements, and felt honoured to hear the journey they went on in achieving this. I also had the thought ‘these brilliant statements need to be accessible for people with a learning disability’.
MacIntyre support a number of people living with Dementia and it was vital for us that the Dementia Statements were presented in an accessible way for people with a learning disability and/or Autism (not just within MacIntyre) to access. People with a learning disability and/or autism they have as much of a right to know these exist but to also understand them and so we knew there would be work to do to ensure they are presented in a way that made sense to people with a learning disability and/or Autism.
Could you tell us about the process of developing the accessible Dementia Statements, and where to find them?
MacIntyre got to work to find a way to keep true to what the Dementia Statements said, but to put the words in a way that was simpler to digest. Easy Read (with images to the side) was the way we were going to achieve this. Luckily for MacIntyre we have two groups that support this process (the Keep Going…….Don’t Stop! team – ‘KGDS for short’) and The MacIntyre Checkers (employed by MacIntyre). KGDS create the Easy Read and the Checkers check it. This is a much simplified explanation, as this document took just under a year to finalise. It is a long process, as we involve people with a learning disability in every stage of the process, however this is how we know the work created truly is accessible and co-produced.
The initial stages of planning meant that we really had to spend time together on each statement, understanding what was being said, and making sure to keep all of the important words and messages in each of the Dementia Statements. Language had to change for example ‘inclusion, discrimination’. We also realised quite quickly that the words Statements and Rights needed their own supporting Easy Read explanation to really make this piece of work meaningful and accessible to all.
We set about finding pictures (using Photo Symbols) to represent the words of the Dementia Statements, for people we are supporting that cannot read, so it was important that the picture used can help to explain the message/key ideas without text being necessary. This is quite a long process and we regularly had to review each image with several different people to ensure it made sense.
We have produced an accessible document that we are SO proud of and truly can say is an example of best practice and co-produced work at its finest. This document will benefit hundreds of thousands of other people to access the Dementia Statements, and if you are reading this we hope that you will share them to support this vital piece of work.
To access the Easy Read Dementia Statements go to https://www.macintyrecharity.org/releasing-the-easy-read-dementia-statements/
What have you got planned for the future in work around supporting people living with dementia and carers?
The resources created by ‘MacIntyre’s Dementia Project’ were funded from the Department of Health and Social Care. This funding ended in October 2018, but MacIntyre has embedded ongoing work so the legacy of the Project is sustained. MacIntyre Trustees have made a commitment to underwrite salaries for the Dementia Project team from charitable funds so the team will continue to provide training and support focused on health, dementia and wellbeing. MacIntyre is actively seeking grant funding for health, dementia and wellbeing related projects to support sustainability. Marketing via social media will continue and all eBooks and resources are being made freely available on the MacIntyre website; we release a resource each Friday. MacIntyre is in discussion with various organisations about hosting the eModules so anyone can access them.
To access our learning disability and dementia resources released so far go to: https://www.macintyrecharity.org/our-expertise/dementia/dementia-resources/
In addition, you might find resources on our Health page useful too: https://www.macintyrecharity.org/our-expertise/health/health-resources/
Your organisation contributed to the NDAA’s campaign to support Seldom Seen and Heard Groups and specifically for people with learning disabilities. What issues would you say people with learning disabilities that are living with dementia face and what support do they need?
I really think the NDAA Roundtable events in 2017 well summarised the issues and gave superb recommendations within their Seldom Heard, Now Seen & Heard Campaign. If you haven’t already, I urge you to read the Briefing Paper on this and the notes from the day as this will tell you where we are at Nationally and what we all need to do to work together on this: https://www.dementiaaction.org.uk/assets/0003/4616/LD_Roundtable_notes_-_For_Launch_Event.pdf
It is important that a campaign such as this is not stopped or forgotten about; there is still so much to do in the area of learning disability and dementia. MacIntyre have made the decision to share all resources we create free, as we want to help other organisations, families and many others access the good practice. We are all part of a problem but also all part of the solution, and unless we all begin to work together and share, we will not create better outcomes for all.
Tell us something interesting about yourself.
I originally did a degree in English and then Post Graduate Certificate in Education, becoming a qualified English Teacher. I taught at a couple of local Secondary Schools before changing career. My path to MacIntyre hasn’t been starting as some people might: a Support Worker and then working their way up, however this is what I love about Health and Social Care, we can attract people from all walks of life who can contribute successfully to a thriving and rewarding career. Each day really is so different and I am constantly learning from those around me and at the end of each week, I think ‘wow the work being done in Health/Dementia/Wellbeing really is improving lives and making a difference’ and that is what drives me forward and keeps me going.