Dear all,

Thank you so much for your ongoing support with this campaign. Dill is incredibly grateful to each one of you.

We wanted to share some vital updates, and to share some new email templates you can use to support Dill in their ongoing fight for safe, appropriate care, and imminent discharge home. These emails relate to a decision that will be made by the ICB this afternoon, Tuesday 9 August so we would really appreciate it if you could take a minute to send them today.

On Thursday 28th August Dill experienced a difficult day, as one whole year had passed since admission, having not left a single room, laying completely flat, bed bound. 

Unfortunately despite our best and continued efforts we have been unable to keep Dill’s existing daytime care agency of 2 years. The ICB’s decision that Dill’s 24 hour care must be provided by a single agency has meant that their discharge has already been significantly delayed.

Since Monday 18th August the ICB has pushed ahead with a rushed, dangerous, budget-oriented 4-week handover plan. Dill's ME has rapidly declined while trying to keep up with the pace of this plan, and we are deeply concerned about their welfare. They are currently experiencing worsened pain, rapid weight loss, inability to eat and drink, missing medications due to being unable to take them, heightened sensory overload to lights, sound and touch, intermittently non-verbal and have experienced new debilitating symptoms that now require medical attention as a result. We are now working to ensure that Dill’s care is handed over in a safe, managed and sustainable way to reduce the risk of further deterioration, failed discharge, or life-threatening situation. 

The handover plan

The handover plan was originally 4 weeks. We strongly advocated that this plan is causing Dill to deteriorate, and after a significant number of barriers and resistance, the ICB agreed to extend the plan - but only by a single week. Dill and their advocates have continued to push for this handover period to be reconsidered and for training to continue in the community. Despite Dill initially being told the decision was final, we met again to express our grave concerns over Dill's well-being and potential package breakdown. After lengthy discussion, the ICB will now be considering this at a meeting today, Tuesday 9 August.

Week 1: New care team shadow old team
Week 2 & 3: New care team take over all shifts with one member of old team present for “emotional support” - we advocated for this to now also allow for “guidance”
Week 4: New care team completely take over (originally would have been week 3)
Week 5: Dill discharged from hospital

Why is it dangerous?

Dill has now been working with the same carers for the past two years. They have an in-depth understanding of Dill’s complex care, and it’s simply not possible for the team of 16 new carers to be trained to a suitable level in this timeframe. Dill has still not even met all of the new carers, and only one of the team is sufficiently trained in pad changes. They haven’t had time to learn Dill’s non-verbal cues, which is a vital part of being able to engage in safe care delivery.

When left with inadequately trained carers Dill is forced to instruct and train them themself. This leads to Post-Exertional Malaise, taking a huge toll on their health and exacerbating their ME symptoms.

Dill has acutely declined since the beginning of the handover period. They have sat in their pad for 48 hours on four separate occasions, and once for four days, between Saturday 31st and Tuesday 2nd, which presents a risk of sepsis. The handover is exacerbating Dill’s illness, which is making it impossible for Dill to engage properly with the new carers, creating a vicious cycle. The longer this goes on the harder it will be for Dill to recover.

All of this harm is compounded by the handover happening in the unsuitable hospital environment.

The ICB risk assessment

Alongside the inappropriate discharge plan, The ICB created a risk assessment which was both contradictory and accusatory. In an attempt to avert from their own ableist, institutional violence, they used the risk assessment to paint the Mir family as problematic. The risk assessment displays a clear power imbalance, weaponises Dill’s distress and frames it as “verbal abuse”, and is littered with unfounded, hurtful statements. Some of which Dill feels are culturally biased. 

We believe the risk assessment is contradictory to the discharge plan. It states that unsafe moving and handling “could ultimately lead to severe health implications and even death”. It also recognises that if the care package breaks down Dill would likely be forced to be readmitted to hospital - something acknowledged to be hugely detrimental to Dill’s wellbeing. Therefore, a safe handover of Dill’s care and adequate training for new carers is vitally important. This is an incredibly pivotal time for Dill and rushing the handover will only cause much greater problems down the line.

The ICB have emphasised the importance of budget, however if Dill deteriorates further and is rehospitalised due to an unsafe handover, it will be far more costly overall.

How you can help

Please use these email templates to ask the ICB and NHS to extend the training period and ensure a safe handover of Dill’s care:

Email to the ICB
Email to the NHS

As we continue to fight and advocate for/with Dill to receive safe care, we appreciate every single interaction with this petition and the Team Dill social media pages. Connect with us on Instagram and Tiktok to follow our journey. 

Solidarity,

Team Dill

xx