Campaigning

Supporting children with type 1 diabetes and their families

Hospitals

We appreciate the support we get from the diabetes team at MK Hospital. Nevertheless, there are not enough staff trained in children's diabetes care - particularly outside normal office hours. However, Great News! We have received a letter from the Chairman of the Primary Care, Dr Nicholas Hicks via MP, Dr Phyllis Starkey promising two major changes .

An Additional Paediatric Diabetes Specialist Nurse - this financial year!
The PCT are requesting that the Hospital appoint a new consultant in 2008/2009 who will have the specialist skills to fully support pump therapy .

We did a lot of campaigning a couple of years ago - on the radio, even television but all this resulted in was an empty promise of an extra nurse who never materialised. This time, we are far more optimistic with the new PCT Chairman, who demonstrates a clear understanding of the NICE guidelines and National Service Framework. We also greatly appreciate the support from Dr Phyllis Starkey.

Click here to see the letter

Here is a reminder of the minimum care we expect from the hospital

24-hour/ 7Days a week helpline. This is not an unrealistic demand - it is specified in the National Service Framework for Diabetes. Currently, we only have two part-time paediatric diabetes nurses. We believe there should be equivalent to two full-time diabetes nurses. This is in line with good hospitals and would meet the National Service Framework. The Royal College of Nursing (RCN) recommends one specialist nurse for every 70 children. Milton Keynes has 140 children with diabetes. We look forward to the appointment of the extra nurse.

A Paediatric Diabetologist. Instead we have two general paediatric consultants who are very helpful but cannot be expected to have the depth of knowledge of a specialist. Judging by the PCT letter, hopefully this issue will be solved in 2008/2009.

A Psychologist who can give regular proactive advice. This should help families to support their children to persevere with this complex condition. Currently this can be arranged through referrals. It would be far better if psychologists were able to be involved with the team at each clinic so they steer families away from trouble before it gets to a crisis stage.

Regular educational support sessions. This is where issues such as diet, psychology and alternative insulin regimes could be discussed in a less formal setting than the family clinic sessions. We are now working in partnership with the hospital to provide such events. Recently, we ran a cheese and wine evening featuring presentations on carbohydrate counting. Carbohydrate counting is an essential skill for people with diabetes - and we hope that the hospital team will continue to support and mentor parents to carbohydrate count and to work out carbs to insulin ratios. We are currently working on -planning the next session - all ideas for content welcome.

	Robust systems for out of hours emergencies. We need clear systems that all departments of the hospital understand. These systems need to be made clear to parents of children with diabetes.
	Multiple daily injections combined with carbohydrate counting, pump therapy and continuous glucose monitoring. Many families have at last moved onto multiple daily injections. We want the hospital to be more proactive with new techniques rather than just responding reactively to handful of parents who have requested referrals for better therapies. This will help to improve our children's quality of life and help to prevent long-term health complications. Hopefully, based on the above PCT letter, this goal will be achieved.
	We want the hospital to be more proactive with schools. Most schools in the area are helpful, some have been fantastic in the way they support our children. However some have been obstructive. The part-time diabetes nurse is very good at giving presentations to teachers and children. We want to take this further. We want the hospital to set minimum-level individual care plans for children with diabetes which must be tailored and monitored in regular consultation with parents. There is also a national initiative between the Juvenile Diabetes Research Foundation, INPUT (The pro-insulin pump group), Diabetes UK and the Children with Diabetes Advocacy group to produce standard guidance for schools. So, hopefully this situation will be solved on a national basis soon.
	Better information for parents of newly diagnosed children. This should include giving them information about our group. Being newly diagnosed is frightening and involves all sorts of other emotions - for child and parent. So it is vital to meet other families who truly understand what you are going through. We also believe that parents of newly diagnosed children should be warned that night-time hypos can involve violent fits. Such fits have happened to at least half the children in our group. Parents should be emotionally and physically prepared for such an event. They should also be given insulin regimes and blood testing times that will help to minimise the chances of night time hypos.

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Type 1 is not the same condition as Type 2!

Moving on to another campaigning issue, there is something else that really 'gets our goat', 'drives us up the wall' etc etc. It is the media lumping type 1 and type 2 diabetes together as if it is the same condition. Even worse they imply that all diabetes is caused by childhood obesity. Rubbish!

The causes of type 1 diabetes are yet to be established. For some reason the immune system in the body destroys it's own insulin producing cells in the pancreas. We all need insulin to help get the sugar we eat into our cells to give us energy. So, people with type-1 diabetes have to take insulin injections every day to survive.

There are about a 100 children in Milton Keynes with diabetes. As far as we know, they all have type 1 diabetes. Now, you only have to look at the photo on the home page to see that all the children in the group are healthy - except when suffering diabetes complications. You will also see that they are not obese!

Type 2 diabetes is also called 'Adult Onset diabetes' because onset usually happens after the age of 35. People with type 2 diabetes still make their own insulin - but the insulin is not effective at getting the blood sugar into the cells. Most can manage their condition by taking tablets - although they often progress to insulin injections if their condition worsens. Type 2 is often caused by lifestyle. Apparently there are reports in America of overweight teenagers developing the condition.

This does not mean that all people with type 2 have the condition because of their lifestyle. Some adults with type 2 are otherwise healthy. Our point is not to say that people with type 1 are better than people with type 2. We just don't want our children being tarred with the same brush as many people with type 2 who could have prevented their condition with a healthier life style. We also don't like it when the media report of millions of people walking around with diabetes that are unaware they have the condition. This is only true for type 2's. If type 1's don't get diagnosed they would be in a coma.

We regularly appear on local radio (Three counties and Horizon) to get this point across and we also write complaints to national newspapers and the television when they over simplify. This is an ongoing battle. The childhood obesity debate is very topical and we agree that children need a healthy diet - diabetic or not. The problem seems that when ever childhood obesity is mentioned, journalist love to spout; "there are alarming levels of childhood obesity which is linked to diabetes and heart disease". It's become a bit of a cliché and helps dramatise their point but it is completely out of context.

We even challenge our parent organization on this issue. We were very cross with an article in 'Balance' magazine which jumped to conclusions that type-1 diabetes could be caused by obesity. So, we sent this complaint letter.

An abridged version of the letter was published in the May 05 issue of balance. We are grateful the letter was published. We were a little disappointed that the editor's reply did not address the points we raised. Still, we've made our point and hope that the editorial team will think twice before writing similar articles in the future!

One of our members, Clare Scott was infuriated when she heard a news report on Horizon radio implying that most childhood diabetes is caused by over-eating and bad diet. So, she rang up the radio to complain. She was a little taken aback when they asked to visit her house to interview her. This was a new experience for Clare who had never been on radio before but she did a great job at explaining that type 1 diabetes is both hard to live with and it's causes have nothing to do with diet!

Nigel Hammond dissuaded Horizon radio from linking diabetes with a government study on diabetes in children. Also both Nigel Hammond and Angie Gardner were interviewed on three counties radio to explain the differences of type 1 and type 2.

If you hear any media reports or read any of the diet books that associate obesity with diabetes in children, please set them straight!

Disclaimer:

The information presented on this web site it for general use only and is not intended to provide personal medical advice or substitute for the advice of your physician. If you have any questions or concerns about individual health matters or the management of your diabetes, please consult your diabetes care team. Products highlighted on this web site are not necessarily endorsed by diabetes UK