(Image: a past photo of Dill, in a purple hoodie, smiling)

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Dill’s Background

Dill is a disability justice activist, poet, writer and dedicated community organiser from Leeds. Since 2018, they have been living with an immuno-compromised neurological condition called Myalgic Encephalomyelitis (ME). Their symptoms are complex, mainly severe pain and fatigue.

Dill suffered for years with inadequate community care due to systemic failings by Leeds City Council. By 2024 their illness had become so severe that they qualified for NHS Continuing Healthcare (CHC) under the umbrella of the Integrated Care Board (ICB), for complex and palliative patients. CHC is notoriously difficult to access, and we crowdfunded for professional representation.

In August 2024 Dill’s GP warned they were at imminent threat of dying, and they were transported to Leeds St James‘s Hospital (LTHT) under full sedation. Dill has been unable to leave the hospital since then, and their condition has deteriorated further as a result of the unsuitable hospital environment and multiple institutional failings. 

The NHS is unprepared to meet the needs of people with severe ME - a 2024 inquest following the death of a patient with severe ME found that “there were no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe Myalgic Encephalomyelitis (ME).”  - ME Action found that patients suffering from ME who have been similarly dismissed have gone on to die as a result of state negligence.

(Image: a front facing photo upon admission of Dill lying flat in bed. They are severely ill and have visibly lost a lot of weight)

Dill's unbearable symptoms:

• Dill has not walked for over a year, is 100% bed bound, and spends 23 hours a day laying absolutely flat with multiple support bolsters.
   
• Atrophied (curved) feet where the muscles shorten as a result of not walking.
   
• Bed pressure sores on both elbows and heels. 
   
• Sitting in faeces and urine for 24-72 hours, leading to skin and bladder infections.
   
• Severe nerve pain requiring liquid morphine.
   
• Black, uncleaned layers of dead skin covering their whole body.
   
• Matted, glued hair which has only been washed twice in 12 months.
   
• Ear infections due to wearing earplugs to block out ward sounds. 
   
• Psychological distress from institutions which has caused suicidal ideation and trauma.

(Image description: Dill in their hospital bed, laying completely flat surrounded by supportive bolsters and string to tie the malfunctioning bed together)

Dill’s symptoms have been caused by the following institutional failings:

• The hospital has mismanaged 15+ bed transfers with warped and ill-fitting mattresses. When Dill wishes to sit up, the mattress becomes more painful, forcing them to lay flat for a whole year. 
   
• CHC removed Dill’s night carers while they were in hospital, leaving huge gaps in their care. These gaps had to be filled by their elderly, disabled mother who slept on the floor for 8 months, which has also caused her considerable health problems. 

• When the hospital finally agreed to provide a night agency, shifts are often missed. Some carers have exhibited verbal and physical abuse, safeguarding investigations are ongoing as a result.

• Both CHC and the LTHT have asked friends and family to provide care that should be done by trained professionals, such as feeding, physiotherapy, and moving and handling.

• Whilst there are hospital staff who have been helpful, supportive, and make kind effort to understand Dill's ME, they are overall in the minority. There is not enough support available, overall there is an institutional failure to accurately document, assess, and provide appropriate treatment.

(Image description: Dill and their mother, in better times)

How can we help Dill?

We have tried our best to engage with both the CHC and LTHT, to do what is best for the patient under their care.

The NHS state that they are acting in Dill's best interest, yet have not implemented the majority of specialist advice, leading to further harm. We continue to witness the NHS prioritise power and control over Dill, threatening their safety, recovery, and ultimately, their life.

Thank you for joining us in solidarity for our friend as we campaign to avoid their complete collapse. We hope to transport them safely home so they can begin to heal.

You can help by:

🖋️ SIGN this petition (it's international!)

✊🏻 SHARE this petition

Follow @ Teamdill__ on Instagram and Tiktok.

✉️ WRITE to the hospital and CHC using the pre-populated email

The email templates can be found at: https://tinyurl.com/dill-emails

Thank you,

Dill's family, friends, and advocates ❤️