Told We Can't Get Palliative Care For Mum As We already Have Carers From CHC

[Lottie40]

Hi,
Mum has deteriorated over the last 24 hrs .One of the GPs came out this morning and told Dad and brother that she is nearing end of life.She has a chest infection for which she has been given liquid antibiotics .We all want Mum to stay in her own home.My brother spoke to Mums own GP earlier on the phone and asked about palliative care,apparently she said we can't have it because Mum has carers coming out covered by the Continuing Health Care Grant .I want Mum to be as comfortable and as pain free as possible surely Palliative Nurses would be best? I don't understand why her GP said Mum can't have it .

Not sure what we can do any help or advice much appreciated thankyou .

Lottie

 

[FifiMo]

Hmmm I smell some porkie pies here. I think I would go down the route of "I don't really care who funds what. I am asking you to advise me who I can contact when mum perhaps requires more than 4 x5 minute visits from carers. Would that then be you, GP? District nurses? Are the carers qualified to provide nursing/medical services? Maybe her care plan needs to be reviewed?"

Then perhaps contact Hospice at home and see if they operate in you area. They are a charity as are admiral nurses. This is about you feeling supported as a family as well as ensuring your mum receives the end of life care that she deserves and is entitled to!

Having said all of the above, please do not allow this to detract from what little time you might have left with your mum. You can raise hell after t event if they don't step up to the plate when you contact them and if they don't respond you can call 999 and ask for a paramedic to attend. I can understand your annoyance but take the time to spend with your family right now. It is a horrible thing to say, but you don't get a second chance in these circumstances. We are here if you need reassurances or support, so from that point of view you won't be entirely alone.

Take Care,

Fiona

 

[Haylett]

Lottie40, I don't know how the funding works or who does what - but I am absolutely sure your Mum is entitled to palliative support at end of life.

To clarify: I cared for Mum at home but had fantastic support from the palliative care community team attached to the Macmillan hospice. They didn't send out nurses to nurse Mum - that was left to me and another carer - but they reviewed and fine-tuned Mum's pain killing medication (and not to sedate, but to kill the pain and keep her as lucid as possible); they pushed the local District Nurses to get us a hospital bed at home; they pushed for a variable airflow mattress via the OT/DN team (the DNs were prevaricating, but the palliative team insisted); and a representative visited to get the DNR forms in place, as well as a Just In Case box. The JIC box was filled with the sort of meds Mum might need over a weekend if she were suddenly to be agitated, or in acute pain, or having difficulty breathing, and their purpose was to stave off a hospital admission.

The OTs helped to get the sort of hoisting equipment we needed (not a full body hoist but a standaid), and we were more or less sorted. I had emergency out of hours numbers I could call if I was worried or if Mum suddenly developed something I felt unable to deal with.

If the nurses aren't available directly, then I'm sure you should get this sort of specialist palliative advice at the very least. I phoned the hospice directly to get immediate help, but the referral is usually via the GP.

I have to say that my opposite neighbour who is a Marie Curie nurse, felt that we should be eligible for Marie Curie nursing at home - a referral that is done via the DNs and the DNs refused though gave us no reason. (Probably because we were coping, albeit with matchsticks propping up our eyelids!) I was told that Marie Curie visits were free of charge to the patient but not sure if that is determined by the charity or LA....

 

[nitram]

The CHC care plan may not include the provision of nursing and the GP may be restricted in requesting nursing support, (s)he may also be unwilling to shoulder any additional cost.

I would talk to the CCG or CHC coordinator, tell them your Mum has deteriorated and now requires more than carer support.

 

[Prudence]

Hi,
Mum has deteriorated over the last 24 hrs .One of the GPs came out this morning and told Dad and brother that she is nearing end of life.She has a chest infection for which she has been given liquid antibiotics .We all want Mum to stay in her own home.My brother spoke to Mums own GP earlier on the phone and asked about palliative care,apparently she said we can't have it because Mum has carers coming out covered by the Continuing Health Care Grant .I want Mum to be as comfortable and as pain free as possible surely Palliative Nurses would be best? I don't understand why her GP said Mum can't have it .

Not sure what we can do any help or advice much appreciated thankyou .

Lottie

Contact your local hospice directly and they can advise you.

 

[Lottie40]

Thankyou all for your helpful and supportive replies .Ive spoken to the Community Nurse and she said they will be giving palliative support to Mum ,she said the GP probably meant that we cant have two teams going in (or something?) .Anyway,I just care about getting Mum what she needs .She did say that as Mum is much frailer now,she may not pull this current infection ,which I know .
I just have a gut feeling Mum hasnt got long left ,she is sleeping a lot and isnt very responsive now .She can still swallow but isnt able to take much in .
I seem to swing from feeling so sad to then feeling like its surreal .

Thankyou all for your kindness and help.

Lottie x

 

[cookiebabe]

Sorry to hear about your Mum Lottie40 i'm thinking of you at this very stressful and upsetting time. Hope all is as well as it could be xx

 

[TinaT]

Get in touch with your local hospice and ask that a community nurse comes out to visit your mum for palliative care. My mum was getting continuing funding and had palliative care at home thanks to the advice and help that the hospice gave to us.

xxTinaT