Help Dill get the care they need to survive

by Liv & Jamieson in Leeds, England, United Kingdom

Help Dill get the care they need to survive

Total raised £8,542

£10,000 target 8 days left
85% 157 supporters
Keep what you raise – this project will receive all pledges made by 28th July 2024 at 8:21pm

We are raising money on behalf of Dill who has very severe M.E. They require professional advocacy for NHS Continuing Health Care funding.

by Liv & Jamieson in Leeds, England, United Kingdom

Please give what you can to help Dill get professional advocacy for the care they need!

Dill lying in their bed with an eye mask on, wearing a black top, hair tied up, hands clenched. They look ill, resting under their blanket

UPDATE:

Thanks to everyone for your generosity in getting us this far!

We have engaged Beacon with the help of your support and Dill’s assessment for Continuing Healthcare funding is booked for mid July.

In the meantime they continue to struggle to eat, drink, medicate and use the toilet. Their mother is beyond exhausted at filling the gaps of the 24 hour care needed.

If you live, work or study in Leeds, please sign this petition to Leeds City Council for urgent additional care hours, adding the first part of an LS postcode to prove your connection to the area.

Since Dill’s state continues to deteriorate, we’ve increased the fundraising goal to cover additional costs that have arisen from the lack of ASC action and NHS waiting lists. This includes emergency medical expenses, the cost of an MRI and complex transport.

We’re grateful for every penny you can contribute, and every share that you’re able to make with people who might have resources they can spare.


What are we asking for?

We’re raising £10,000 (was originally £5,000) to pay for professional advocacy to apply for care through the night.

Dill, 31, from Leeds, is an incredible artist, poet and organiser in our local community. 

They have a rare neurological condition called severe Myalgic Encephalomyelitis (ME) and 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.

Background

Dill's wellbeing and safety are being compromised by Leeds City Council’s Adult Social Care (ASC) decisions. Despite being unable to provide overnight care due to government restrictions, ASC has also declined to offer alternative solutions such as OWLS pop-in nurses or extended daytime care, including assistance using their commode.


As a result, Dill is being left without access to toileting for anything up to 24 hours. Their eating, hydration, and essential pain relief are suffering. Additionally, Dill’s elderly and also Disabled mother is staying awake 24 hours a day to lift, move and medicate Dill when she can.

This is a financial decision by ASC, who are prioritising budgets over Disabled citizens’ wellbeing, and even their very survival.

ME has significantly impacted Dill's life:

  • They are only eating 300-500 calories per day and one glass of water to try and reduce the amount they need to use the toilet.
  • Dill is in constant and worsening pain. Infection is causing further complications.
  • Dill is deteriorating quickly and severely - they are barely able to speak or eat. 
  • Dill is trapped in a cycle of malnourishment, dehydration and sleep deprivation. 
  • This is putting immense stress on both Dill and their mother, and we don’t know for how much longer they can cope.

Dill and Zaheen are smiling at the camera. Both are wearing party wear and make-up. Zaheen has pink to purple hair and a teal necklace. Dill has black hair with white highlights and is in black mesh.

Dill and their mother Zaheen, in easier times

What will your contribution fund?

Until ASC changes their position, the only route towards getting help to use the commode, and get their essential morphine pain relief through night time hours is to apply for Continuing Healthcare (CHC) through the NHS.

This is a gatekeeping process designed to be hard to access. None of the self-help routes like Citizens’ Advice or Advonet are able to help. As a result, an industry of companies charge large percentage fees to secure it.

We want to pay Beacon their fixed fee to  review Dill’s records and advocate for a CHC assessment, which is £3,500 plus VAT, so £4,200. They have a 70% success rate, whereas when we previously applied without advocacy, Dill’s case was rejected, and they were too ill to appeal within the time limits. We also need to raise £800 for crisis-related expenses that will help Dill's survival.

We appreciate all help — no matter how small. And if you can’t contribute, sharing this fundraiser is a wonderful help too.

Thank you! 

Liv and Jamieson on behalf of Dill.

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