3 Family Carers of relatives with Learning Disabilities and/or Autism (Chris Sterry, Judith Gwynn and Kate Chapman) started working together with a PHd student (Rachael A Black) at the University of Sheffield (Department of Human Communication Sciences) using the framework of Co-production. This was initially to provide research for Rachael’s thesis required for her PHd, but also to have a meaningful outcome for LD Carers within Sheffield, UK
At the start of this co-production Rachael enquired through Sheffield Mencap & Gateway for carers of persons with Learning Disabilities to work with her on her PHd project. During the last 18 months we have had regular meetings at the University of Sheffield on how we would proceed with this project and what our initial outcomes would be. Initially through general discussions, which Rachael was recording, it became clear that the recurring situations was around carers communications with the range of Service Providers. Within the context of Service Providers it included Sheffield Adult Social Care through Sheffield City Council, various health providers ( being GPs, Sheffield Teaching Hospitals, Community Health, and many other health areas) together with the independent Care Providers including charities, voluntary and private independent providers.
So that we were not restricted around our own views we decided to create 2 surveys, 1 to be completed by LD carers reflecting on their interactions with Service Providers and the other survey to be completed by Service Providers reflecting on their interactions with LD Carers. The surveys were created on Survey Monkey and during their creation we had a number of meeting to discuss how these were to be formed, the number of questions to be included and the specific questions. When we were all satisfied with both surveys they went live on Survey Monkey and electronic links were disseminated through our various range of contacts within Sheffield, UK.
We also discussed how we wished to to use the information from these surveys in addition to the original outcome for Rachael’s thesis. and decided we would wish to do this in a form of a presentation. We looked at possible dates and venues and obtained costings and also viewed each venue and then using co-production decided which venue to book and how we would advertise the event and provide a means for LD Carers and Service Providers to book to attend the event, which we did through Eventbrite and agreed on a format for a flyer and a website (Carer Voice) and the event title being Carer Voice Working Together.
Carer Voice Final Notes
Thank you for coming today and now you have seen the presentation and been involved in the workshops in which carers and service providers have worked together. This is how it should be for we are all here for the same reason, to ensure vulnerable persons, be they be our relatives or not, have provision to ensure their needs are met and they can then led their own lives.
Communication is but one key, but an extremely important key and without it all that is there can fail.
With this in mind I facilitate a support group LD Carers Butty Group, also known as Central group or Butty Group, where there is also a website LD Carers Butty Group and a mailing/distribution list. There are other support groups and details of these can be obtained from the Carers Centre and from Cathy and Kirsty from Sheffield Mencap & Gateway (Sharing Caring Project).
If you wish to be included in the mailing/distribution list please advise your email address. While this was produced with carers in mind, it does not mean that service providers cannot be included. Information sent will include areas relating to disability both local and national as well as notes for the support meetings.
Lunch is now ready and there are some leaflets from a selection of providers please view and take away and continue to network throughout lunch.
Do not forget to put on a post it the message you are taking away from this event and an evaluation form will be emailed to you, please return with your comments.
Our thanks to
University of Sheffield, Department of Human Communication Sciences for funding the event
Sheffield Central Fire Station for the room
Healthwatch Sheffield for the pens
After the Carer Voice : Working Together event we sent the following email to everyone who attended the event and also to those persons who could not attend but did express an interest in the event.
“We just wanted to get in touch to give you an update on the work we are doing following the Working Together Event in October.
As a group we have met once to go through the feedback and will be meeting again in December. Where we will start drafting some standards and guidelines for communication between family carers and providers of service based on the information you gave us.
In early 2018 we will email these to you for your feedback. If you would not like to receive these emails then please do let me know and I will remove your name form the mailing list.
We are also planning to pull together a small working group in the New Year to ensure the standards are accessible and practical. If you would be interested in being in this group, please do let us know. It will consist of 2 to 3 meetings at the University of Sheffield.
Please also find attached some information about care workers in the independent and charity sector and the flu vaccine which we hope will be of use to you.
If you would be interested in receiving a copy of the presentation we gave on the day please do get in touch and I will send this to you.
Rachael and Carer Voice”
We have now met in December and have started drafting some standards and guidelines for communication between family carers and providers of services based on the information given to us during the Carer Voice : Working Together event.
The draft documents were produced.
So we could enage with service providers we held 3 meetings.
Intialy we met with representatives of Sheffield Adult Social Carer and Sheffield City Council Commissioning who viewed the documents and made some comments regarding some minor alterations.
The second meeting was with some service care providers who also made some contructive comments.
The final meeting was with representatives of Sheffield Clinical Commissioning Group, who also welcomed the documents and wished to use these in conjunction the their ‘For Pete’s Sake’ campaign’ and offered us a 15 minute presentation slot in the Assistive Technology event on the 28 June 2018.
Chris gave the presentation at the event and it was very appreciated by the atendees.
The presentation can be viewed here