Telephone: 01794 515126
Email

Diabetes Aware
9 Love Lane
Romsey . Hampshire
SO51 8DE

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Introduction to your local support group

Diabetes Aware is a friendly group of people with diabetes, (together with some of their partners or carers) who meet to share their experiences of diabetes.

This circle of support was set up by people with diabetes, who wanted to meet others with the same condition and chat informally about their feelings and experiences.

You may find it helpful to talk to other people with diabetes who may be able to share your experiences - both ups and downs, help with recipes and diet, share concerns , information, advice and support.

Your local group in Eastleigh and Test Valley South meets monthly but you can always telephone and chat to someone from the group in between meetings.

There is programme of interesting speakers as well as an opportunity to chat informally.

Contact Anne 01794 515786 or Lynn on 01794 523915 for more information or just turn up at a meeting. You will be made very welcome.

The group does not take the place of professional advice given by the Diabetes team at your surgery, but aims to give a more informal friendly angle to your condition and to give you the opportunity to share mutual support based on personal experience.

Please remember...

You know more about yourself and your lifestyle than any professional and they can only help you if you want to be helped.

Any action must be about what you want and need as well as what healthcare professionals recommend.

Professionals are there to provide medical expertise/advice to help you manage your own health, but it is up to you to choose whether to act upon that advice.

Information and checklists available from Diabetes Aware are intended to help you manage your own Diabetes and enable you to lead a normal and healthy life. You can also access a range of useful information from your local surgery, from Diabetes UK and from a number of other sources.
A regular annual review will help you to understand your own medical condition and to find out how to take control of some aspects of your health (please see Checklist 3)

Don't let your diabetes spoil your life. Continue to live your life - go on holiday, travel and enjoy special occasions.

BUT please also remember...

  • moderation in all things
  • and monitor your diabetes carefully.

Development of Diabetes Aware

Diabetes Aware was set up because two people with diabetes met whilst caring for someone else. They found they both had diabetes and although one was Type I and one was Type II they were able to empathise, encourage and understand each other’s situation. This time together was something they valued and when the caring role came to an end they were determined to continue the contact.

They both shared access to a diabetes nurse and they discussed with her the possibility of expanding to include other local people with diabetes in their circle of support.

After fixing a meeting date and, with encouragement and support from the nurse, they prepared invitations and sent them to all the GP surgeries in the area for passing on to their patients with diabetes. 14 people turned up to the first meeting.

Most of the initial participants were feeling isolated, concerned, alone, disempowered, worried about the future, desperate for information to help them - but overwhelmed by the mass of information around – much of which gave contradictory and confusing advice.

Everyone had been told something similar and everyone had been told something different!

Some had been given a lot of professional support but were still in denial. Some had been given very little support and knowledge.

People who had been diabetic for some years had been given so many different strands of advice that they sometimes did not know what to do for the best – and they found that it was assumed they knew about all the current trends and methods of coping with diabetes.

Some people who had been newly diagnosed did not realise that it was a condition that would deteriorate; others were feeling lost and worried about the future.

Everyone agreed they wanted to continue to meet and share their experiences and to help each other to cope and learn.

Why do we value being able to meet and talk to each other?

People at the first and subsequent meetings identified the following:

  • People with diabetes often feel alone and isolated.
  • Sometimes people just need to discuss their concerns with someone else and this could be at the group meeting or by contacting another person with diabetes
  • It is hard to come to terms with the fact that you are suffering from any long term disease and it helps to share with others in a similar situation
  • Coping with diabetes is not helped by the myths and mysteries that surround you.
  • You cannot always take in all the information given to you at once and the once-a-year appointment system does not give you time to ask all the questions you need.
  • Everyone requires time to assimilate the knowledge they need. The information should be repeated often and in different ways
  • It sometimes seems as though everyone else knows what you should do and how you should behave and what you should eat – but they are all doing something different to you because they do not have diabetes!
  • Knowledge is the key to understanding and management but the information can be fragmented and muddled with everyone having their own theories about what is best.
  • Some professional support is excellent some less so
  • Information is patchy and often vague e.g. being told to cut down on your salt intake does not actually help you understand how much salt is advisable, or how to cut down, or how to measure the amount of salt in any food.
  • Standardisation of figures is not always helpful, making you feel you are just a statistic and that your condition and its control is just part of tick-box culture which has no bearing on you as an individual.
  • We need support, guidance, encouragement, information and knowledge and respect for our ability to manage our own life and condition with the right help and support.
  • Everyone is different. Each person reacts individually to any situation.
  • We need to decide in partnership what our levels should be, what they are and what we are aiming for – not told they are high or low or need to change as though we are a robot
  • Our relatives are given little support to cope with our condition. They are not advised on how to deal with a hypo or hyperglycaemic attack. They are not given support to cope with our ups and downs.
  • It is good to talk to someone else who understands some of the emotions you are feeling and who is aware of the physical and mental effects that diabetes has on you as a person.

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