Woman with severe ME dying due to criminal negligence

[GreyHeron]

Apologies for the shocking title but it's hard to frame this woman's situation any other way. She is dying of malnutrition and dehydration due to failings by a specific NHS trust. I hesitated to share this because I absolutely don't want to be seen as bashing the NHS at a time when it is under such severe threat but in this case this particular trust are behaving appallingly. Please click through to read the details of Karen Gordon’s case and consider signing and sharing the petition. It could help to save her life.

https://tinyurl.com/mrybhw83

I have signed this and shared it to several groups. ME/CFS is an awful condition and its just not OK that people are being failed like this. Poor family.

I am a bit confused. From the Trust's perspective, why do they want her sent to St Mark's?

This bit:

Trust stated in a letter to Karen, dated the 14th of March 2023, that ‘It is important to understand that you require a minimum of 500mls of enteral feeding per day when you are at home. If you are unable to tolerate this and have declined St Mark’s referral there is no alternative that the Trust can offer.’

Seems to be suggesting that she cannot tolerate the feed and something is needed they cannot provide. What would an admission at St Mark's achieve? Why would she even need to go there? It seems a bit technical. I would like to know the hospital trust's reasoning as it seems they had been (tolerably) accommodating up till this point.

The severity of her illness means that St Marks is not appropriate for her. The travel and staying in hospital could/would cause a further flare that her body would not be able to handle as she is already very severe. The conquest want her on a ward which is not possible for patients with severe ME due to sound/light intolerance. She needs to be treated locally in an environmentally controlled room and then at home. With this in place she might stabilise. Without it she is likely to die.

This might help give some context

You've misunderstood me @goldensky I understand why the hospital setting is inappropriate for someone with severe M.E. I totally get that 100%. I am asking why the hospital is now insisting that St Marks is necessary, which would seem a turnaround from their original treatment position, where they previously tried to accommodate with a special room and gave supplies for use at home. What change makes them think it necessary now?

I totally understand that regardless, special accommodation needs to be made here.

@DysonSpheres OK soz. thank you.