Help Millie and her family with legal and medical costs

*** UPDATE***

Week 18 - Millie continues to deteriorate and struggle in the hospital environment.

A mediation meeting has been held via solicitors with the hospital Trust and family.

Millie now has an official diagnosis of ME/CFS accepted by the hospital.

Unfortunately, getting NG tube feeding at home no longer appears to be viable option and a PEG tube procedure is being offered as a route to get Millie discharged home with a suitable feeding solution.

Millie and family are worried about Millie’s extra fragile state to have this done but see it as her only viable route home.

Millie’s family have found a wonderful local care company with some understanding of ME/CFS to come into hospital for a few hours a day to meet Millie’s ME/CFS care needs in the mornings.

Some of the money already raised will cover this for a few weeks but if more can be raised this can cover more hours and more days for Millie to receive this support, which would really help her at this difficult time.

We would also like to use this care company plus maybe another nursing one once she is discharged home to provide her with ME/CFS sensitive care.

We are looking into council funding but we aren't sure if we will get it or get it fully.

As we have said we also want to use ME/CFS Drs to support Millie at home who are often mostly private so will also incur costs.

So your donations will really help Millie get the care she needs with her very severe ME/CFS.

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This fundraiser is being set up to cover legal costs (a solicitor), private ME/CFS specialists and private care after hospital for Millie McAinsh.

Millie (age 18) has very severe ME/CFS and has been in struggling in hospital for nearly 12 weeks to receive the care she needs and to return to the safety of her home environment with a feeding tube which is necessary due to the level of exhaustion and pain she is experiencing with her condition.

Her and her family thought the hospital stay would be a week or less to get a feeding tube and return home to the best environment for the management and treatment of her symptoms which include extreme pain and sensitivity to sensory stimulation (light, sound, touch, pain, movement), fatigue and post exertional malaise (PEM) following any exertion.

●The situation with Millie has got to the point where there is a total breakdown of trust between the hospital and Millie/family. Because of this they have made the decision to involve a solicitor to try and get matters resolved.

●Once Millie is out of hospital family wish to engage with the best Dr's and other healthcare providers available to help manage Millie’s MECFS symptoms and also to move along the road to a full recovery as far as possible; all this will be costly as most of these providers are private.

●Top ME/CFS specialists in the UK state that "Some patients with very severe ME will require tube feeding, either enterally or parenterally." (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/).

Millie is one of these unfortunate patients and family wish to use a private care company to help with NG tube feeding at home due to a lack of NHS services in Millie’s postcode area for this and alongside support from the hospital and NHS community nurses; this will incur costs of travel and care.

Funds are going to Lucy Montgomery (Millie's Mum), to manage on behalf of Millie.