Deaf, Diabetes and a Determination to Help

Diabetes affects people from all walks of life. It is indiscriminate and in many cases is brought on through a person’s lifestyle. The problem is, if you get diabetes, it changes your life, well if you want to hang around for any length of time it does. It raises the risk of a significant number of associated medical issues, from heart disease to losing toe nails and lots of things in between.

Far from being immune from diabetes, deaf people are also susceptible and yet many deaf people are unaware that their lifestyle puts them at greater risk. For those that already have diabetes and despite the efforts of Diabetes UK to make information available, little of that information takes into account the communication needs of the deaf community. Deaf Diabetes UK (DDUK) was formed in 2010 to try and fill that gap. We think the work of DDUK is worth promoting and should be shared widely amongst the deaf community.

On the increase for many years, the UK is littered with people who were either ignorant of, or decided to ignore the risks. DDUK was launched by Catherine Forry, Deaf Advocate, Director of Deaf Advocacy and Justice 4 Deaf People who identified gaps in the both statutory and voluntary services.

Catherine herself has Type 2 diabetes allowing her to empathise with Deaf people who are living with the condition. Catherine understands the importance of accessing accurate information so that people can self-manage the condition.

Like the SLFirst team, she has serious concerns for Deaf people who have diabetes and their access to misinformation / myths about diabetes (both Type 1 and Type 2) sometimes leading to people not understanding the seriousness of the condition. If not managed properly this could lead to complications that could have been avoided. With accurate information and effective support, people are able to minimise the risk factors. Consequently, DDUK seek to provide a full explanation of diabetes in an accessible format for Deaf people.

However, keen on prevention, DDUK also consider that is it equally important for Deaf people who do not have diabetes to be aware of the diabetes risks so that they can take preventative measures. DDUK have a vision to:

• Become nationally recognised; 
• Set up a local Deaf-led DDUK network support group;
• Establish a DDUK Support Line for Deaf people who have diabetes;
• Work with the NHS and professionals to remove barriers and make their services accessible for Deaf diabetics
• Empower Deaf diabetics through education and understanding to take control and raise confidence.
• Offer Deaf Advocacy support (trained in this line of work). 

DDUK is the only Deaf-led organisation supporting Deaf BSL users (British Sign Language) with diabetes, campaigning for better Deaf access to both statutory and voluntary services involved with Diabetes and assisting Deaf people living with the condition. It is an independent non-profit organisation which is run by Deaf volunteers.

In addition to supporting Deaf people with diabetes, DDUK are also there for family, friends and carers offering them support, information, advice as well as signposting to other support services. “I feel strongly that DDUK is Deaf-led as we should take control of our own health matters, rather than via Deaf organisations who are hearing-led, especially those involved with Deaf people's health matters, but not really involving them,” Catherine commented.

DDUK launched the first ever deaf diabetes conference in 2010 where issues of deaf specific needs and gaps in service were highlighted. Despite concerns being raised, NHS reforms have seen the withdrawal of the NHS Diabetes Service and this has added additional problems with inadequate lines of communication to the deaf community leading to confusion and misinformation.

Currently un-funded, DDUK is the only Deaf led organisational providing advice, information and advocacy for Deaf BSL users with diabetes. Catherine is of the view that more of the money that is available should be channelled into service delivery. As she explained, ‘Funding and time is being wasted by organisations on research about Deaf health when all we get are the same issues being highlighted time and again relating to access and communication needs. The Deaf BSL community has known what’s wrong for many years, it is the long awaited improvement we are looking for. Instead of continually funding research, I think it is high time funding should be used to improve Deaf people’s access to NHS services and information via registered sign language interpreter provision.”

In 2013 representatives of DDUK met with Diabetes UK who agreed to fund the London Deaf Diabetes Support Group, which was set up in November that year. Catherine hopes to extend this model to other parts of the UK. The need for specialist support for the Deaf community was highlighted during Deaf Day at the City Lit earlier this year. “We had to clarify a lot of misinformation about diabetes, said Catherine. “I am pleased that a local NHS Diabetes team were with us and they were able to answer many medical questions from Deaf people because interpreters were present.”

Keen to support as many people as possible, Catherine is working on a further project with Diabetes UK which she hopes to launch later this year. Having seen the complex language used by an NHS Diabetes Team during presentations, Catherine is of the view that the information is not ‘accessible’ even with interpreters present. She has developed a talk which is delivered with a deaf audience in mind and feedback up to now has been very positive. “I will be training volunteers to give this talk in BSL as it’s vital that the Deaf people are receiving consistent information,” Catherine explained. DDUK have already delivered this talk in six different Deaf Clubs throughout the UK this year, with three more planned and more requests coming in all the time.

For more information about Deaf Diabetes UK visit their website at: deafdiabetesuk