A new group representing people with type 1 diabetes has expressed serious concern about the treatment of people with this condition.
T1 Advocacy is a national, not for profit patient representative group, which aims to raise awareness about the many issues facing children and adults with type 1 diabetes in Ireland. It was established earlier this year.
The group is made up of adults with the condition and the parents of affected children. They came together because they felt ‘increasingly frustrated by a lack of support, awareness and advocacy of type 1 diabetes'.
In some cases, patients are having to wait up to five years for access to insulin pump therapy, ‘only to find that their much awaited pump is an old model already outdated', the group pointed out.
Type 1 diabetes is an autoimmune disease that occurs when the immune system attacks cells in the pancreas, resulting in no insulin being produced. Insulin is an essential hormone that controls our blood sugar (glucose) levels, which are needed for energy. It is treated using insulin injections or an insulin pump.
Poor management of the condition can lead to serious complications such as damage to the eyes, kidneys, heart and lower limbs.
Unlike type 2 diabetes, which can be prevented, type 1 diabetes cannot be prevented and there is no cure.
According to TI Advocacy, those affected in Ireland ‘are not happy with the services and technology currently being provided by the HSE'.
It noted that while up-to-date technology, such as insulin pumps, and services, such as access to endocrinologists and dieticians, are ‘fundamental' for good management of the condition, ‘these services and technologies are not provided nationwide', with some patients having to endure long waiting lists and ‘tedious journeys to avail of a quality service'.
The group has written an open letter to the Minister for Health, Leo Varadkar, asking him to take ‘urgent action' in this area.
It has highlighted a number of issues in the letter, such as the lack of clear criteria when it comes to qualifying for insulin pump therapy. Some patients are left waiting years to obtain a pump and there are only limited models available here.
"Patients that want an alternative pump to that provided by the State need to be very assertive and lobby heavily on their own behalf or on the behalf of their child. Not a challenge for the faint hearted.
"And to actually get issued a pump, patients are very often at the mercy of the clinicians who decide whether you get one or not. Patients report frustration at trying to convince clinicians that they should have a pump hence the need for a clear criteria," the group noted.
Other issues raised by the group include:
-A lack of access to carb counting classes, which are seen as necessary to achieve optimal control of diabetes
-Difficulty accessing special needs assistants in primary and secondary schools for children with the condition
-Poor or no access to certain technologies, e.g. continuous glucose monitors are available to people with type 1 in many countries, however most people in Ireland with the condition do not even realise they are available here. And for those who are aware, it can be a ‘battle' to obtain one.
T1 Advocacy makes a number of recommendations in its letter to Minister Varadkar, including the need for a public awareness campaign that focuses on type 1 diabetes, as many people confuse it with type 2.
For more information on T1 Advocacy, click here