District nurses

[Joluu]

Hi all. I read lots of posts and many of you talk about being supported by district nurses. Just wondering what they do and how you get their support.?Mum's had psp for 10 Years . She has been unable to walk or stand for the last 4 years.she can't feed herself ,has frequent infections and her vision is very poor. Are we missing out not having a district nurse or are they supporting with different problems?

[Kasenda]

Hi, District nurses cover nursing care, equipments and continence care. You can ask your GP to refer you. Once you are registered with them, you can ask them for advice and home visits. They and the Hospice palliative care team were very involved in my husband’s care and were great support to us. Please see the PSPA website for the Multi Disciplinary team who should be involved in your mum’s care.

[Derek1uk in reply to Kasenda]

Since getting my wife's diagnosis of MSA she's been contacted by the Palliative care team that work closely with the local Hospice that she's going to once a week and they have been fantastic. They're upping her Pregabilin and have been phoning weekly to see if they can help., so we have nothing but good experiences.

[Kasenda in reply to Derek1uk]

Yes I agree with you, the Hospice is very helpful and supportive . I think it should be on everyone’s first contact after diagnosis, though we avoided them for a while as we thought of them as ‘end of life care’ .