Learning Disability Listening Event a great success!

 

As part of the Mid Notts VCS Alliance, Ashfield Voluntary Action and Mansfield CVS have been working together with the Integrated Care Partnership (ICP) Board to deliver a listening event focusing on insight from people living with a learning disability and those who provide support.

 

The event provided a platform for people living with a learning disability and the organisations that support them to discuss the ways in which they had been impacted by Covid-19. The event explored the way in which improved communication and other system changes could improve access to services and health outcomes for the LD community. 

 

This well-attended event, with 50 participants, was a first step and commitment to future collaboration and brought together a wide-range of partners to discuss the ways in which they could develop a holistic approach and coordinate the work currently being undertaken. If you would like to watch the event please click on the image below to play the video.

 

 

The listening event was opened by Steve Morris, CEO of Mansfield CVS. This was followed by a short introduction and scene setting by Rachel Munton, Chair of the Integrated Care Partnership (ICP) Board who fulfilled the role of independent Chair on the day.

 

The first presentation was by Brad English (Clinical Psychologist and Activist at One Conversation) who provided context to the event through statistics on health outcomes for people living with a Learning Disability within the overarching LD perspective. Tracy Radford (Activist at One Conversation) then talked of the importance of gaining an authentic perspective from people with a Learning Disability and discussed the barriers which may arise in gaining their true perspective. Tracy then introduced Kriss (Champion at One Conversation) who gave a lively and frank insight into his reflections on accessing services throughout the pandemic. Kriss also made a compelling case on the steps which could be taken to include rather than exclude people with a learning disability. For more information on the work of One Conversation please click HERE.

 

This was followed by a presentation from Catherine Shatwell, (Associate Consultant, Reach Learning Disability) which supports people living with a learning disability and their carers. Catherine spoke on the wide-ranging work of the charity, and particularly on their 'Carers Matter' project.

 

Catherine then introduced the incredibly moving testimony of Steve who shared the experience of his family and the life and death of his brother Richard who lived with Down's Syndrome. Steve reflected on the experience of his brother and gave invaluable insight into some changes which could have made a massive difference to the experience of his family.

 

Catherine followed this testimony with some recommendations based on the collated experience of their service users and talked about the need for mandatory training, the importance of continuing face-to-face services wherever possible, the need for annual health checks, discussions about DNAR (Do Not Attempt to Resuscitate) decisions, the end of life care pathway and the vital importance of clear guidance and communication. To find out more about the work of Reach Learning Disability click HERE.

 

Karen Aspley, (Stop Hate Crime Co-ordinator from Nottingham Mencap) was the next speaker. Karen gave her thoughts and solutions around the practical and every day experience of people with a Learning Disability accessing the Covid-19 vaccine with a focused exploration on the process.

 

Karen said that through conversations with service users and their carers they had been able to identify common issues and practical solutions. She commented that service users often reported real confusion about the process and that this was because some people with a mild learning disability or autism may not feature on the disability register and therefore not identified as needing additional support. As a consequence, some service users were not sure on how to proceed. This was compounded by the fact that whilst those staffing vaccination centres were helpful they did not always have experience of working with people with LD or autism, or the skills to deal with their anxieties.

 

Karen said some aspects worked really well - for example Nottinghamshire County Council were excellent in disseminating information. Karen also focused on some of the easy read guides available; some were better than others; some could contribute to anxieties and the material was not always consistent. Karen spoke of this in the spirit of constructive criticism and cited an excellent video which Mencap used with their service users which may be found HERE.  

 

Karen commented that some of these issues could easily be addressed with improved signage at vaccination centres, better training of staff and volunteers, prompting and support for people with LD or autism, and information videos which helped translate the process to people in a clear and accessible way. Click HERE to download the presentation or click HERE to find out more about Nottingham Mencap.

 

The next part of the event featured a presentation from David Ainsworth, Locality Director from Nottingham and Nottinghamshire Clinical Commissioning Group. David introduced the Integrated Care System's approach to the largest scale vaccination programme in the history of the NHS, and said that over 450,000 people had been vaccinated in Mid Notts. David said that there were around 2,250 people aged over 15 on the register with a learning disability in Mansfield, Ashfield and Newark & Sherwood. Currently the vaccine take-up for this group is 79% which sounds fantastic, but means that a significant proportion of people with a learning disability have not had the vaccination. David commented, that this good, but we have some way to go. David acknowledged that some of suggestions raised in the earlier presentations and films would be simple to achieve and that they could, "...get on and do it".

 

David said that the Inequalities Framework highlighted that people with a learning disability or autism shouldn't be left behind. He extended an open invitation to those present at the listening event to become involved. David said that it was our collective responsibility to achieve this agenda, no-one should be left behind. Although the focus is currently on vaccination there is a much-wider agenda around access, health outcomes and quality of life and it is our responsibility to protect people who were very vulnerable. David then introduced his colleague, Simon Browse to talk in detail about the vaccination programme. 

 

Simon Browse is a consultant nurse working currently on the vaccination programme in and around Nottinghamshire, leading on learning disabilities and autism. His work is also feeding in to other patient cohorts who may be vulnerable or encounter barriers in accessing services. He said that his focus was to do things a bit differently, to ensure that people's choices were not limited in relation to their wants and needs when accessing the vaccine. He said that it was important that people's choices were not limited through making assumptions.

 

Simon said that initially everything had been incredibly confusing and people had found it difficult to get information, but they were learning through the process. He said that he would, for example, take away the lessons he had learned today in relation to appropriate and accessible signage in vaccination centres. Simon said that he recognised that it was important that they made it easier for people to let them know what their needs were and this could include where and how they had the vaccine; whether that was in their own home or GP practice etc. Simon remarked that they had had some successes in relation to accomodating people with additional needs. Making sure that having a vaccine was an easier and more comfortable process, for example, but there was a need to raise awareness around the need for varying the service to meet need with dedicated provision. 

 

Simon closed his presentation with a brief update on some of the latest developments including the pop-up bus and pop-up clinics which should widen easier access to vaccinations.   

 

The presentations by David Ainsworth and Simon Browse may be found HERE or by clicking on the image to the left.

 

The presentations were followed by a Question and Answer session, expertly chaired by Rachel Munton, which resulted in a wide range of questions and lively debate. 

 

Hayley Barsby, Chief Executive at Mansfield District Council and Deputy Exec Lead of the Mid Notts ICP and with personal experience of caring for young people with LD and autism began by reflecting that the NHS was normally very adept at making adjustments for people with additional needs. Hayley remarked that these adjustments and variations need to be put in place now. There followed a discussion on how adjustments and resources could be made / developed, the difference these adjustments make and why it is so important. Both Brad English from One Conversation and Helen Hassell, an expert by experience, reflected that using flags on System One, the NHS app, or care passport, for example, could be used to better effect and ensure that information was available through to secondary care. Brad also commented on the importance of adopting common and inclusive terminology.

 

Kinsi Clarke, Partnerships Manager from Healthwatch talked about the importance of involving people with a learning disability in the decision making process and developing a culture of support to include people. This resonated with the audience who were in strong agreement.

 

Adele Smith, Learning Disabilities Commissioning Manager for Nottingham and Nottinghamshire Clinical Commisioning Group reflected on the opportunity of using the NHS app as a resource to support people with LD given that it is widely available. Adele said that reasonable adjustments were already being looked into in relation to the communication plan.

 

Rachel Munton commented that the event was already resulting in a list of actions with organisations and indivuiduals attributed to these actions. 

 

Attendees had the opportunity to both raise questions in person or via the chat facility and there was lots of discussion on annual health checks (and other services) being paused or done online throughout the pandemic and the impact of this. 

 

Training for staff and volunteers at vaccination centres in relation to learning disability was also raised. Simon Browse responded that the CCG was currently working on online training, specifically including reasonable adjustments and the importance of clear communication. Simon said that it was their intention to deliver live sessions, but they would be recorded so that they could be disseminated and the learning shared. The question was asked whether people with LD would be involved in delivering training. Simon responded that co-production was the norm, but acknowledged that it was more difficult to do within the context of the pandemic. This aside, they would co-produce as much as possible. Offers of support came from accross the floor and the comment, "let's keep the ambition high" refelcted the tone. Helen Hassel remarked that lessons learned from this could be translated into other situations and Tracy Radford said that this laid the foundations for bigger and wider conversations around health inequality where people with a learning disabilty were part of the solution.

 

Sian Booth the Cultural Services Manager from Mansfield District Council also reflected that this piece of work linked in to the Community Champions work around Covid-safe messaging and lessons learned could be shared across the whole of the ICP.

 

Rachel closed the event by thanking everyone who attended or had been involved in the day. She commented that it had been, "...a fantastic listening exercise, but of course listening is only important if we hear what's said and then having heard it then translate that to action which is then fed back". Rachel went on to thank Kriss and Steve for their powerful contributions and said that she hoped that the focus on inequality was here to stay and we must avoid tokenism or 'ventriloquism' in listening.

 

We leave the final words on the day to Kriss...

 

 

There were lots of positive comments from the day:

 

Rachel Munton, Chair of the ICP Board, 'This event offered some real insights into the practical steps that can help and support those with learning disabilities and their families - which we must work together in Mansfield and Ashfield to implement. The lessons learnt from the experience of COVID-19 must not be wasted.'

 

David Ainsworth, Locality Director from Nottingham and Nottinghamshire CCG remarked, 'The event was a fantastic way to hear the voice of people living with a learning disability or autism and the one that hit home the most for me was ‘we want to be part of your society, so let us in.’ 

 

Stephen Brown: ‘This has been an excellent session with some powerful and insightful contributions. Thanks to all involved for arranging it.’

 

Hayley Barsby: ‘Thank you for the invite this has been very informative and great to see so many people wanting to make a difference to those with LD and Autism.’

 

Sasha Bipin: ‘Thank you to all!! This was a great event with a lot to take on board.’

 

Leanne Monger: ‘Thank you everyone - this has been an excellent, informative and powerful event.’

 

Tracy Radford and Brad English, One Conversation: 'What was so encouraging about the Listening Event was the commitment to the ONGOING process of establishing equity for learning disabled and autistic people. The collective acknowledgment of the amount of tokenism that is occurring as we all claim to listen to the voices of learning disabled and autistic people was quite refreshing... the genie is out of the bottle now, and this partnership provides an exciting means for us all to step up and create change.'

 

Jill Carter Pulp Friction CIC: ‘Thank you....so glad I found about this event (purely by chance).’

 

 

 

 

 

   

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