Give NHS patients throughout the UK access to Hydrocortisone Infusion Pumps


Give NHS patients throughout the UK access to Hydrocortisone Infusion Pumps
The Issue
Adrenal Insufficiency is a life threatening illness currently treated by the NHS by oral steroid replacement therapy and emergency solu-cortef injections during a crisis. Research shows the condition can be much better managed and quality of life improved if patients such as myself Angela Key-Milnes were given the use of a Hyrdocortisone Pump which would greater mimic the body's natural circadian rhythm of cortisol release.
There are children wanting to live normal lives.
Adults unable to perform every day tasks.
Too many trips to the hosptial
Children missing out on quality time with sick parents
People unable to work and contribute to the community
LIVES CAN BE CHANGED WITH THE HYDROCORTISONE PUMP
Primary and Secondary Adrenal Insufficiency is a rare Endocrine Disorder which effects between 1 and 4 of every 100,000 people. In the UK alone there are over 8,400 people who currently suffer from Addison's Disease also known as Primary Adrenal Insufficiency.
People who are Adrenal Insufficient are not able to produce enough Cortisol. Cortisol is an essential hormone which helps maintain blood sugar, controls the immune response and allows the body to respond to stress.
Due to a lack of Cortisol production, those who are Adrenal Insufficient become Steroid Dependent and must take replacement steroids every day for the rest of their lives, otherwise the body will go into adrenal crisis leading to coma and death.
The treatment of adrenal insufficiency includes the daily replacement of glucocorticoid Steroids. The aim of treatment is to minimize symptoms of hormone deficiency and lessen the chance of adrenal crisis, whilst at the same time ensuring the hormone is not over-replaced.
Under-replacement of glucocorticoids can result in fatigue, nausea, low blood pressue, headaches, feeling dizzy and light headed, having profound muscle weakness and joint weakness.
Over-replacement of cortisol can result in weight gain, high blood pressure, fatigue, muscle weakness, anxiety, osteoporosis and diabetes.
There are currently three different oral medications that can be used to replace Cortisol: Prednisone, Dexamethasone, and Hydrocortisone. Both Prednisone and Dexamethasone are long lasting and release slowly in the body so they are taken once or twice daily. However Hydrocortisone (HC)is the only one that is bio-identical to Cortisol, and is therefore the preferred treatment option. It is quick acting, but is only usable in the body for 4-6 hours. This means people with AI must take HC every 3-5 hours to ensure their body has a constant supply to utilize.
It has been long recognised that oral HC therapy does not adequately restore cortisol levels and therefore many on HC replacement therapy continue to suffer debilitating symptoms due to under and over replaced cortisol levels. This also means that patients of Adrenal Insufficiency are at ever increasing risk of entering an adrenal crisis due the inability to mimick the natural circadian rhythm of adrenal hormones.
Due to the difficulty of oral medication mimicking daily Cortisol circadian rhythms numerous studies have been carried out to investigate the effectiveness of using diabetic insulin pumps to perform continuous subcutaneous hydrocortisone infusion on patients with Adrenal Insufficiency.
Research has proven that Hydrocortisone pumps successfully mimic the natural circadian rhythm achieving a more accurate and steady release of Cortisol into the blood stream than conventional oral steroids. The implications of such research demonstrate that quality of life can be improved and that by using a Hydrocortisone pump a patient of Adrenal Insufficiency is less likely to suffer from continual over and under replacement of hormones.
Research continues to take place and positive experiences of improved health and quality of life continue to take place as more patients are given the opportunity to use a Hydrocortisone Infusion pump.
I petition to the NHS to allow myself Angela Key-Milnes and many other UK sufferers diagnosed with Adrenal Insufficiency the chance to live normal, healthy lives by providing Subcutaneous Hydrocortisone infusion therapy as a legitimatemethod of daily steroid replacement therapy.
The NHS Constitution states,
" The service is designed to diagnose, treat and improve both physical and mental health".
"The NHS is committed to providing best value for taxpayers’ money and the most effective, fair and sustainable use of finite resources".
The health of those unable to adequalty manage AI with oral hydrocortisone can be greatly improved with Continuous Subcutaneous Hydrocortisone Infusion therapy. Such medication would better manage cortisol levels reducing the number of adrenal crisis, ambulance call outs, trips to emergency departments and patients in ICU.

The Issue
Adrenal Insufficiency is a life threatening illness currently treated by the NHS by oral steroid replacement therapy and emergency solu-cortef injections during a crisis. Research shows the condition can be much better managed and quality of life improved if patients such as myself Angela Key-Milnes were given the use of a Hyrdocortisone Pump which would greater mimic the body's natural circadian rhythm of cortisol release.
There are children wanting to live normal lives.
Adults unable to perform every day tasks.
Too many trips to the hosptial
Children missing out on quality time with sick parents
People unable to work and contribute to the community
LIVES CAN BE CHANGED WITH THE HYDROCORTISONE PUMP
Primary and Secondary Adrenal Insufficiency is a rare Endocrine Disorder which effects between 1 and 4 of every 100,000 people. In the UK alone there are over 8,400 people who currently suffer from Addison's Disease also known as Primary Adrenal Insufficiency.
People who are Adrenal Insufficient are not able to produce enough Cortisol. Cortisol is an essential hormone which helps maintain blood sugar, controls the immune response and allows the body to respond to stress.
Due to a lack of Cortisol production, those who are Adrenal Insufficient become Steroid Dependent and must take replacement steroids every day for the rest of their lives, otherwise the body will go into adrenal crisis leading to coma and death.
The treatment of adrenal insufficiency includes the daily replacement of glucocorticoid Steroids. The aim of treatment is to minimize symptoms of hormone deficiency and lessen the chance of adrenal crisis, whilst at the same time ensuring the hormone is not over-replaced.
Under-replacement of glucocorticoids can result in fatigue, nausea, low blood pressue, headaches, feeling dizzy and light headed, having profound muscle weakness and joint weakness.
Over-replacement of cortisol can result in weight gain, high blood pressure, fatigue, muscle weakness, anxiety, osteoporosis and diabetes.
There are currently three different oral medications that can be used to replace Cortisol: Prednisone, Dexamethasone, and Hydrocortisone. Both Prednisone and Dexamethasone are long lasting and release slowly in the body so they are taken once or twice daily. However Hydrocortisone (HC)is the only one that is bio-identical to Cortisol, and is therefore the preferred treatment option. It is quick acting, but is only usable in the body for 4-6 hours. This means people with AI must take HC every 3-5 hours to ensure their body has a constant supply to utilize.
It has been long recognised that oral HC therapy does not adequately restore cortisol levels and therefore many on HC replacement therapy continue to suffer debilitating symptoms due to under and over replaced cortisol levels. This also means that patients of Adrenal Insufficiency are at ever increasing risk of entering an adrenal crisis due the inability to mimick the natural circadian rhythm of adrenal hormones.
Due to the difficulty of oral medication mimicking daily Cortisol circadian rhythms numerous studies have been carried out to investigate the effectiveness of using diabetic insulin pumps to perform continuous subcutaneous hydrocortisone infusion on patients with Adrenal Insufficiency.
Research has proven that Hydrocortisone pumps successfully mimic the natural circadian rhythm achieving a more accurate and steady release of Cortisol into the blood stream than conventional oral steroids. The implications of such research demonstrate that quality of life can be improved and that by using a Hydrocortisone pump a patient of Adrenal Insufficiency is less likely to suffer from continual over and under replacement of hormones.
Research continues to take place and positive experiences of improved health and quality of life continue to take place as more patients are given the opportunity to use a Hydrocortisone Infusion pump.
I petition to the NHS to allow myself Angela Key-Milnes and many other UK sufferers diagnosed with Adrenal Insufficiency the chance to live normal, healthy lives by providing Subcutaneous Hydrocortisone infusion therapy as a legitimatemethod of daily steroid replacement therapy.
The NHS Constitution states,
" The service is designed to diagnose, treat and improve both physical and mental health".
"The NHS is committed to providing best value for taxpayers’ money and the most effective, fair and sustainable use of finite resources".
The health of those unable to adequalty manage AI with oral hydrocortisone can be greatly improved with Continuous Subcutaneous Hydrocortisone Infusion therapy. Such medication would better manage cortisol levels reducing the number of adrenal crisis, ambulance call outs, trips to emergency departments and patients in ICU.

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Petition created on 5 February 2014