Whereas diabetes is a relatively common condition, diabetes in childhood is much rarer. The staff in Clinic look after children with diabetes on a regular basis, and will be able to give you the best advice. Telephone numbers are given overleaf.

Your own GP and health visitor will also be very keen to help, although they will not have so much experience of children with diabetes.

It is not unusual for friends and family, colleagues at work, and people you meet to give well-meaning advice. As you might expect, the quality of this advice will be very variable! Occasionally, you will pick up some good tips. However, a lot of the advice you are given will be out-of-date, inappropriate for your particular needs, or just plain wrong. If you are given advice which differs from what you have been told in Clinic, it is probably best to ignore it, or discuss it with the Clinic staff next time you come.

Insulin, syringes, lancets, and blood-testing strips are free on prescription. Your GP can prescribe pens and pen needles. The Diabetes Specialist Nurses can advise on the maintenance, repair and replacement of blood sugar meters.

You can apply for "Disability Living Allowance" because your child needs extra supervision. The benefit is not means-tested. Your application is most likely to be successful if your child is young (less than 11 years old) or has additional problems. The form is complicated. You can get help in filling it in from the Specialist Nurse, Citizens Advice Bureau, or the Benefits Agency.

If you wish, we can put you in touch with a Social Worker, who can advise about other benefits which you may be entitled to, or help in other ways.

Sometimes one of the early signs of diabetes will have been a change in your child's behaviour, but this is very short lived and should disappear once treatment commences. However, parents often comment that their child seems different: what has usually changed is not the child's behaviour, but how the parents are reacting to him. In fact, the whole family can become more edgy, and find it more difficult to get along with each other.

Eating problems, sleep problems and temper tantrums are all part of normal childhood. Moodiness and seeing how far you can go are part of normal adolescence. Children with diabetes are just the same as any others when it comes to going through these stages. Most parents can usually work out satisfactory ways of dealing with these stages in children, but if you feel concerned, talk it over with the staff at the clinic and they will be able to advise you.

Diabetes UK is a registered charity, whose members include people with diabetes and their families, and most of the professionals involved in the care of diabetes in this country. It exists to support and advise people with diabetes, and campaign for improvements in quality of life and medical care. The cost of membership is £15 per year, but young people under the age of 18 can join free for the first year if they wish. You can visit the website (free) at www.diabetes.org.uk

The Diabetes UK magazine "Balance" is free to members, and appears every two months. It is a "good read” which offers advice about living with diabetes, keeps you up to date with the latest research, and includes features, pen-pals, games and recipe ideas.

The organisation runs and subsidises educational holidays for children with diabetes throughout the UK. There are holidays for different age-groups, covering a wide variety of activities. In addition there are a number of family weekends in Scotland each year. Parents and children (with diabetes and without!) will find these both informative and enjoyable.

You can meet other people with diabetes by joining the local Diabetes UK group. Activities include social meetings, outings, talks, and fundraising. There is a special group for younger children within the Inverness branch (the Tadpole club). You can contact the organisers (telephone numbers below) to find out when and where they meet, and get a copy of their programme of events.

Diabetes specialist nurses

Joan McKechnie 01463 701321

Pam Campbell (Caithness and North Sutherland) 01847 893442

Dietitians

Clare Parsons (Raigmore) 01463 704000 extension 5212

Kaye Jackson (Fort William) 01397 702481 (ask for by name)

Gill Gormanley (Skye) 01478 613200

Caithness 01955 880269 (24h answerphone)

 

Dr George Farmer, Consultant Paediatrician

Secretary; 01463 705324

Diabetes Centre, Raigmore Hospital 01463 705457 (reception)

Children’s ward, Raigmore Hospital 01463 704335

Diabetes UK

Savoy House, 1 Sauchiehall Street, Glasgow, G2 3DH 0141 332 2700

10 Parkway, London, NW1 7AA 0207 424 1000

Diabetes UK (Inverness and District branch / Tadpole Club)

Contact - Jo McLaren, 01463 792443

The Scottish Study Group for the Care of Diabetes in the Young

The Group is made up of doctors who look after children and young people with diabetes. Our aim is to improve diabetes care. We also provide professional advice and statistical information to the NHS in Scotland.

Since 1985, the Group has kept a register of all children in Scotland who develop diabetes before their 15th birthday. The details recorded are; name, date of birth, date of diagnosis, the hospital at which the diagnosis was made, the name of the consultant responsible for care, whether there are any other members of your immediate family who have diabetes, and the address at onset of diabetes (so that we can identify geographical variations).

The Register is special because almost all young people with diabetes in Scotland are included. It has allowed us to monitor the increase in the number of children who become diabetic each year, and has formed the basis of a number of important research studies. We believe that this kind of information can make a valuable contribution to understanding the causes of diabetes.

As a responsible organisation, we take care to ensure that information on the register can not be misused. We promise that

1. The information will only be used for research purposes.
2. Every effort will be made to make sure the register is accurate. Where necessary, we will cross check with information routinely collected for NHS use.
3. Personal information about you will remain entirely confidential. It will not be released from the register to any other organisation.
4. We may be asked from time to time to contribute information to national or international studies. We will only do so where we believe that the study is well-organised, and the results are likely to be useful. Any information we provide will be processed to make sure that individual patients cannot be identified.
5. For the purposes of specific research studies, we may ask you for additional information. If this happens, you will be approached either by your consultant or your local clinic, and we will only go ahead if you give your agreement. Any further information you give will be treated with full respect to your privacy.

Consent

Following recent changes to the law, it is only possible to maintain the Scottish Study Group register (and other similar registers) with the explicit consent of the patients. We would be grateful if you would sign the form that you will be given.

We hope you will join with us in trying to understand diabetes better, and improve the care we offer. If you wish to discuss this further, please speak to your consultant.

After the initial education you should have the following items and information - if not then please let us know.

“Survival kit” documents

Insulin syringes, lancets, glucagon, hypostop, and ketostix – and instructions for use

Safeclip (a device to cut the needles off used syringes – your GP can prescribe this)

A variable depth blood testing device

A blood sugar meter – and instructions for calibration and use

A blood sugar diary – and instructions for use

Injection technique – how to do it – and how to rotate sites

Information about safe disposal of sharps

Hypos – when they happen, and how to recognise and deal with them

Storage of insulin

How to get supplies

School advice sheet

DLA (Disability Living Allowance) availability

Diabetes UK (the organisation for people with diabetes)

Nasty hypos –  how and when to use hypostop and glucagon

Ketones – what are they, when to test for them, and when to use “clear” insulin

How to cope with illness – and when to call for help.

Discuss SSG register/ Consent