Our dear friend Rosy Bremer (two of the above photos are from when she could still support her head) is living with late-stage Motor Neuron disease. Back in May 2024 the Guardian did an interview about her difficulties obtaining a wheelchair:
https://www.inkl.com/news/i-am-very-uncomfortable-mnd-patient-s-long-wait-for-wheelchair
Rosy is now well past the wheelchair stage. She is at the point where she can do nothing for herself and needs 24 hour care. She is only funded by the NHS for 12 hours, despite being utterly dependent upon others for everything. For the remaining 12 hours her friends and family put together a rota so that she was never alone, as she is completely helpless and it is dangerous for her to be alone.
It is wrong for Rosy to have to depend on people who are not Carers to try to undertake the personal and medical care she needs. We really have tried so hard, but just can't manage to give her the advanced care she desperately needs.
So this month her family have clubbed together to pay privately for care for the remaining 10 hours a day (her friends continue to cover the remaining 2 hours each day).
To make up this short-fall is cripplingly expensive. If we calculate on the basis of care costing £25 an hour, £250 is needed per day, £1,750 per week, £7875 a month. We want to raise money for a further two months care - £15750.
Rosy is enormously loved, and has spent her whole life advocating for others whose voices don't get heard. Can you help Rosy now in her time of need? and enable her to be at home in peace and safety without this terrible worry hanging over her the whole time? If 100 people were able to give £79 a month for two months (some more, others less, no contribution too small) we can get her the support she needs for the coming months at what is already a frightening and bewildering time.
Our care system is frighteningly broken and all of us who love Rosy are shocked to the core at how she is being failed at this time of utmost vulnerability. There has been much discussion in the media recently about the importance of dignity in dying. Is this woefully inadequate care for Rosy affording her dignity in all she is having to cope with already? Please please help if you can. Rosy hasn't got long left and is suffering terribly with anxiety around this.
In the meantime we are of course continuing to advocate for 24 hour statutory care, any excess funds will be donated to the MND Association.
We really have absolutely no time to waste.