Intended Audience
People affected by diabetes in the Central Northumberland area.
Health Area
Northumberland Care Trust
Background
The role of the Diabetes Community Support Worker was instigated as a result of a perceived need of the people of Wansbeck. People with diabetes and their carers especially in Central Locality stated that they would benefit from added and different kinds of support for their diabetes. There was also no Diabetes UK group between Newcastle and Berwick.
Support for the need for User Involvement can be found in the White paper - Our Health, Our Care, Our Say - which demonstrates the duty of health and social care organisations to seek and incorporate the views of their patients in service development and decision making. The role has been running since May 2003.
Objectives
The aims of the post were initially to support User Involvement and service development and to establish patient/carer groups in the Central Locality of Northumberland Care Trust.
Also, to work with the a range of health care, other professionals and voluntary sector workers in the implementation of support to people with diabetes in line with local and national policy.
Service Provided
Liason
In order to reach as many people as possible and co-ordinate information, advice and support both for the project and for people with diabetes, the Diabetes Community Support Worker liased and made strong links with a multitude of relevant organisations and forums.
Open day events
To help promote User Involvement and feedback of work already done Open Day Events were held. The events were well attended with around 60(2005) and 80 participants (2006).
There was an opportunity for the participants to see some of the feedback that has been gathered about living with diabetes and how some people feel about the services they receive. This information was in poster format with the opportunity to discuss the issues raised with the diabetes community support worker or lead partner/dietitian on the day.
The aims and objectives were met and the public said it was very useful and worth repeating. Some of the attendees were from Hard to reach groups including people with mental health difficulties, learning disabilities and the physically challenged. There were also a number of Carers supporting people with diabetes or attending in their own right. Healthcare professionals and other professionals also delivered education and information sessions on these days.
Diabetes Groups
User led diabetes groups were set up in 2003. Participants have found meeting together beneficial and the groups are regularly evaluated. Health workers and professionals visit from time to time to offer education and support and also to get direct feedback from people who use the services they provide.
Training
The focus of this work was developed in conjunction with the Diabetes Service to emphasise the benefits of User Involvement for both users of the service, their carers and members of staff. The overall aim of this kind of training is to encourage change or improvements in the services offered to people with diabetes and their carers or families. By using information gathered from patients this allows an opportunity for frank discussion and the capacity to be engaged in proactive training. The one hour session was piloted in spring 05 and evaluated positively and after further modification will be rolled out to practices from summer 06.
Reaching "hard to reach" groups
Meetings were held with people from Black and Minority Ethnic communities and these gave insights into the needs, wishes and suggestions from people with diabetes in these communities. The above information has been documented in the report.
Specific targeted connections are ongoing with members of
· Black and Minority Ethnic Groups
· People with mental health difficulties
· The housebound via visits to a local day centres
· Community groups (to increase awareness of diabetes, the diabetes community support worker role and to gather feedback.)
· People with disabilities
· Parents of children with diabetes
· Carers
Recording experiences of diabetes services
Peoples' experiences of different elements of their diabetes care were recorded with the support of a psychologist. The information can be used to inform how services are shaped and delivered in the future. Some of the recordings can be found in the report.
The information and insights gathered from the diabetes community informed the work that was put forward for development in the Trust and was disseminated in the the professional's training session. All the GP practices in the area have also been visited and awareness of the project and its work raised with them.
Accountability
The project is accountable to all the project participants and Northumberland Care Trust. The steering committee members for the role include:
Alan McCubbin (GP),
Yvonne Doherty (Diabetes Psychologist),
Gillian Johnson (Lead Partner in Diabetes Services),
Sonja Bailes (Health Improvement Manager)
Evaluation
In terms of the project aims, they have been achieved as follows:
3 diabetes groups were set up and self evaluate positively. Over time these groups have amalgamated into one which runs monthly. A number of links have been forged with several local forums and organisations to support the work of User Involvement with the diabetes community.
Multiple approaches to engaging people have been tried. The most effective from the patient's point of view has been face to face contact, and while this is costly in terms of time and effort the rewards are great and it encourages people to give their honest, unbiased opinions. Telephone contact proved successful and worked well for those who were unable to get to any of the 3 diabetes groups out in the community.
The main needs identified by people were appropriate education and information, given at a level that the patient/carer can understand using appropriate resources e.g. large print, use of pictures, photos, and bold print. Another frequent request from patients and carers is that staff deliver up to date, relevant information and that all staff should give the same advice. The gathering of this information further encouraged user involvement in the development of information and support as follows:
What was said and what we did
Improve information leaflets
The Sharps Disposal Information Leaflet was commented on/improved and approved by the Ashington Diabetes Group. The changes included using clearer, larger print and the use of cartoons/icons
A booklet on Type 2 diabetes used by the dieticians was approved by the Diabetes Group in Newbiggin-by-the-Sea.
Commenting on the leaflet being produced by Northumberland Care Trust on the topic of Retinal Screening
Encourage us to get more physical activity, help us find out what?s available
This has been promoted by encouraging the attendance at the Walking for Health scheme, the use of pedometers, chairobics at the open day events and the forwarding of all relevant information of what is available in the local community regarding opportunities for engagement in physical activity including Salsa dancing at the local Healthy Living Centres.
Raising awareness of the Exercise on Referral Scheme, encouraging individuals to join and feeding back positive experiences
Linking people with professionals who can offer support in this area. Claire Orange, Physical Activity Co-ordinator
Have leaflets available for appropriate services and facilities
Encourage healthcare staff to offer Exercise on Referral to patients
Increase awareness of what people say about living with diabetes
The gathering of quotes and comments from those affected by diabetes and using this information in a useful, relevant way. This has been a major undertaking and collaborate effort between the diabetes community support worker and Mike Ridley Dash, assistant Psychologist. The next step is to feed this back to the service providers. There is an exciting opportunity to deliver this work in the -Research as everyone's business- event to be held in May 06 to a large group of health and social care professionals.
Specific small group training for healthcare staff, using information gathered from service users
Video development for training purposes.
These are some of the things that people have said about the groups -
Its good to talk together as a group
I've learned about diabetes things that I didn't know before
It's very friendly at a group
Having things explained is really useful
We have a good laugh
We get a chance to say what we like and feel as if somebody is listening
I like the thought that what I say will help to change the way other people get treated in the diabetes service
More of this information can be found in the full report.
Resources
Initial funding came from slippage money via the diabetes service at Northumbria for the first year. This was continued in year 2 and 3 with funding from Northumberland Health Care Trust. This funding has been approved for one more year to continue at 18.5 hours per week up until 2007
Learning
The opportunity to engage people affected by diabetes in a non-clinical setting is fundamental to the post. This encourages true freedom of speech and honesty when trying to involve people in the design of health services for the future. This is User Involvement in action.
Listening to people and collating their views is the first part of this process. The real challenge is actually enabling staff to do something practical with this information from the patients and carers to improve services for all.
Promoting activities which contribute to the health and well being of those affected by diabetes encourages people to play a full and active life in the local community and encourages social engagement and the building of Social Capital
This role has allowed the opportunity to use community-based services to hold small group activities where the focus is health and well being related to diabetes.
The opportunity to co-ordinate information, advice and guidance and provide links to people and services helps in the sharing of best practice and raise the quality of life for the people who attend group activities, Open Day events, or are in contact with the Diabetes Community Support Worker at any level.
People are stating that they value being listened to and are starting to see the results of their user views influencing change.
Open Events and raising awareness
The days were good value for money and cost around £500.00. Holding the events over lunchtime as a free lunch is an excellent way to help engage the public.
The future
The real challenge for this post is to get out to the GP practices or hospital teams or anywhere else that could benefit from the delivery of the training on User Involvement. Individual pieces of work such as collating information from the Black and Minority Ethnic groups and working on developing systems to influence how healthcare staff approach the subject of erectile dysfunction are planned for the future.