Demand life-saving care for Dill

Anyone who lives, works or studies in the Leeds City Council area can sign this petition. Please include the postcode of an address to show LCC you are local. 

 

 

 

 

Our friend Dill, 31, is an incredible artist, poet and organiser in the local community. 

They have a rare neurological condition called severe Myalgic Encephalomyelitis (ME), They are rapidly deteriorating due to institutional negligence and harm. 

Despite nearly 12 months of trying to arrange life-saving care through Leeds City Council’s Adult Social Care, their basic needs are not being met.

We have made the decision to go public with a plea on behalf of Dill to save their life, and prevent their body from further shutting down. 

Whilst this is a serious yet treatable illness, the lack of adequate care and therefore Dill's access to the commode has resulted in the following:

• Dill's elderly and disabled mother is forced to stay awake around the clock to attend to Dill
• Dill is not able to use the toilet when they need to so is forced to hold in for hours at a time
• They had been eating only 300-500 calories per day and one glass of water to try and reduce the amount they need to use the toilet
• More recently, the situation has caused infection and bowel impaction, which is leaving them barely able to eat or drink. They vomit often and are unable to take their usual morphine
• Dill is in constant and worsening pain
• Dill is deteriorating quickly and severely
• Dill is trapped in a cycle of malnourishment, dehydration and sleep deprivation. This is putting immense stress on both Dill and their mother
• ASC continue to provide unhelpful and contradicting advice such as suggesting that Dill eats and drinks more, but refuse to acknowledge that Dill is sleep deprived and being forced to limit their nutrition intake as a result of their lack of toilet access. 

We have made it clear to ASC that as a result, their elderly and Disabled mother is lifting them whenever she can around the clock instead. This is dangerous for them both. 

ASC know that Dill is in constant pain and discomfort from not being able to toilet more than once or twice a day. They also know that they’re barely eating or drinking as a result, and losing weight rapidly.

We are extremely concerned for our friend's health, wellbeing and ultimately, their life due to this institutional neglect.

Others suffering from ME who have been similarly dismissed have gone on to die as a result of state negligence.  

Please sign this petition to support an emergency intervention, and demand that Leeds Adult Social Care: 

1. Immediately extend Dill's care hours to provide 6 hours of overnight care from 2 carers indefinitely (or until Continuing Healthcare funding is awarded).
2. Allow carers to move and transfer Dill in the way they had previously been doing safely and
3. Ensure that there are enough carers to adequately manage Dill's daytime needs.

This will help Dill to move around and access the toilet when they need it, take nutrition and medication during the night and give them the opportunity to rest and begin to stabilise. This in turn will improve their pain levels, ensure they take adequate nutrition and medication and give them a chance to rest and heal from infection. 

We are also raising funds for private healthcare and for Beacon Continuing Healthcare Advocacy to support Dill through the NHS assessment. You can donate to the fundraiser here.

 

Further information on Dill's situation: 

Dill specifically requires the use of a commode to toilet. Hospitalisation for their condition and alternative toileting solutions have been ruled out by Dill's GP and hospital consultants to be unsuitable and dangerous for them. 

The severity of their ME, pain levels and mobility issues mean that in order to reach the commode, they need two carers to assist them in getting out of bed and then support their pivoting. 

It has been advised that undertaking this small amount of movement, within their energy levels and with pain management, is critical for healing and stabilising their body.

Despite being provided with evidence that Dill's basic needs are not being met and that Dill must be allowed to move in order to recover, Leeds ASC have refused to accommodate their needs. 

They are insisting that Dill must be treated in bed, despite experienced carers handling Dill with no issues and them being physically unable to receive bed care.

We hope that this petition will also set a local and nationwide precedent that people with ME deserve to receive care that is appropriate to their condition and allows them to live with dignity and relative comfort. 

Thanks,

Liv and Jamieson