At my wits end about palliative care at home!!!

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Can anyone advise me about home care and mental capacity status please? 

I'll try and explain briefly our situation - So my dad was diagnosed with terminal cancer in January this year which had started in the lungs, went to the brain (tumor removed) but has now spread to the bones, kidneys and now has multiple brain mets. He has lost sight in his left eye, slurring words, confused, poor mobility, hallucinating etc from the mets. He is on morphine which causes drowsiness and is sleeping alot and therefor missing his meds so last week he was in a terrible state, had the paramedics out and then had a 1 weeks stay in a hospice which turned him around massively. I couldn't believe the difference.

He came home from the hospice yesterday. Refused the home care package. Hospice hasn't informed me about this and therefor i found dad in bed again this morning in an absolute state as he had missed his meds from lastnight and this morning. He is not in the right frame of mind to be making these decisions for himself and I cannot believe the hospice just let him on his way with no carers in place.

I've phoned around the palliative care team who now say they need a referral for care because he's declined it from the hospice and to phone the council. I did which falls under social services who then told me he needs to go into hospital under safeguarding issues which this is absolutely not where he needs to be right now. My dad hates the hospital due to them always sticking him on the dementia ward/end of life which is not where he wants to be spending his remaining time, he wants to be at home with his own comforts. They are his wishes.

Apparently someone is coming out Monday, yes Monday, 2 days away, to do a mental capacity test on him. I have no idea what he'll be like comes Monday. Me and my nan are having to sort his meds now and everything else. Dad lives alone. I feel like we are back to square one. Everything is an absolute battle and have had a terrible experience throughout. I am constantly being passed from pillow to post ringing different numbers. We feel completely stuck. Dad 100% needs carers to administrator his meds. Today he's not eaten or drank anything and will decline massively. But we have managed to get him out of bed once his morphine kicked in.

Can macmillan nurses go out to him to sort this kind of thing? Or will we be looking at private carers because I can't see a way forward anymore.


  • Dear  

     I am so sorry to hear that your dad is terminally ill.  I can “feel” in your message that the situation you have at home is incredibly frustrating, and I can appreciate why.  Being passed from pillar to post and perhaps feeling you are not being heard is heart breaking. 

    May I take a moment to ask, how are you?  Please feel we are here for you, either as part of the Online Community, or on the Support Line.  Should you feel you would like to express your frustration, "in the moment", you may call the Support Line on 0808 808 0000 on any day between 8am and 8pm, or our live webchat is available during those hours as well.

    Many of the options, I was thinking of, you have already approached.  I apologize if I am telling you things you already know.

    An example that you have already had experience of,  would be your Dad’s Adult Social Services Team.  You mention they have identified a Safeguarding concern,  I am wondering are the Safe Guarding team (within Dads Adult Social Services) , going to follow up with your dad?  Perhaps they are planning a home visit to explore a Needs Assessment?   The link below will give you more information about the assessment: the result of it could be Carers to call, help with personal tasks and meals etc.  With regards to helping with his medication, you will need to check that as part of the assessment as each team is different.

    You are welcome to contact your local Adult Social Services team, and as a Safeguarding concern has been recognized, ask to speak with the Safeguarding team directly:  hopefully they will have a plan moving forward.   You can find this team online by searching for  Adult Social Services in the correct town, and once you have found their page, there is a link to click for Safeguarding;  sometimes it’s under Vulnerable Adults. 

    The link below also gives the number for Age UK, they can be very helpful at times like this.  They are very keen, where possible, to support  adults living independently at home.  They are also very supportive when exploring funding for private options for care and nursing.

    Getting a Care Needs Assessment.

        should you feel you would like to explore private options, and you would like recommendations for private agencies, the Care Quality Commission can help within England.

    Homecare Agencies in England

    You may of course not live in England, so your Adult Social Services Team will have knowledge of your local area and can make recommendations.

    The British Nursing Association can also be very informative, around private care and nursing at home. They cover the UK.

    BNA nursing and homecare

    With nursing support in mind, you mentioned the Macmillan nurses.  Regarding the referral for a Macmillan Nurses, they are what's known as Palliative Care Nurses that specialize in pain and symptom management as well as offering emotional support. They can undertake a Palliative Care Assessment to help to co-ordinate care.  These Nurses come under our banner, because as a Charity, we fund their initial training and development and they then go on to work for the NHS.    As such, they work on a referral basis and a health care professional such as the G.P, District Nurse or someone as part of the Health Care Team in the Hospital can support you to make a referral.

    We also have Macmillan Nurses on the Support Line (number above)  They won’t have dads medical records, but, should you have any worries about his health, you are welcome to call between 8am and 8pm on any day.

    Macmillan Cancer Information Nurses

       how are you feeling about the Mental Health Capacity Test and the results from it?  You may feel that you would like to explore Power of Attorney, and again our Support Line can help, via our Financial Guidance team.  You may find the link below helpful, it talks about Advanced Care Planning which includes Mental Capacity and making financial decisions moving forward. 

    Advanced Care Planning

    I am mindful to not overwhelm you with information as you can always come back to us for further support.  I can see you have a lot to think about, so please keep in touch so that we can support you.

    Take care


    Macmillan Cancer Information and Support Advisor

  • Thank you for the informative response. I have been back to the hospice this morning to discuss things in person with the hospice staff and they made a phonecall to the community care team. I had a phonecall back later this afternoon to be told all the caring companies they have tried are at full capacity and there is nobody able to come out to him. The only option is to send him to hospital where another care package could be fast tracked and put into place on leaving the hospital. She apologised and agreed its absolutely ridiculous and a waste of resources as its not really an emergency and dad definitely does not want to go to hospital. We feel completely let down and disappointed with everything. It's like nobody is helping us.

    It is making me ill from the constant stress and worry over dad's wellbeing. I am not sleeping well at night thinking if he's fell or struggling. I live around 45mins away from dad (1hour plus is rush hour) so it's not like I can just pop round to sort his meds or I would. My nan is 77 years old and is having to give him his meds and just this morning she opened the wrong blister pack on the nomad. Luckily she realised but this should be done by the carers 100% hopefully dad gets his mental capacity test on Monday but I'm not holding my breath. I am considering private carers if I don't get any further on Monday.

    Just an awful situation :( 


    I am delighted you were able to talk to the Hospice and at least share your concerns and frustrations:  perhaps it helped, in some small way, to feel you were heard.   I appreciate the outcome was not what you wanted to hear, and it’s understandable that you may now feel more frustrated and hurt.

    To hear there are no private companies must have been heart breaking for you.  I feel sure you will look into this further:  you may like to take a moment to look  into the links I posted about  Age UK and the BNA, they may bring you different options. 

    With Age UK in mind, they are open today should you feel, you would like to explore what they can offer.  Their number is 0800 678 1602.  The link below has a guide to different options of Home Care support, plus, as you worry about falls, you may like to ask about “fall devices” that alert you if Dad has fallen.  Age UK will also help to direct you towards a “Care and Repair” service:  this will be a local service should you feel things like handrails and support in the bath or shower are welcome.

    Age UK Homecare

    I am wondering   are you hoping for care just first thing (to prioritize the medication) or perhaps a four times a day package.  If you were thinking of four times a day, would 24 hour live in care be an option?   My understanding is, there are agencies who offer this level of support, and have more availability:  a call with Dads Social Worker (if he has one) can guide you towards agencies they have experience working with.

    I can appreciate that you are concerned about Dad being in hospital; his last experience sounded so sad for you all.  Should this come about, Dad will get good care in terms of his medication getting to him and you and your Nan will have some respite for a while.  I know it's not ideal for any of you, but the break may be welcome for you and Nan. 

    The Hospice obviously have experience of patients being discharged with a fast track care package:  I am mindful to just check that this support is for longer than a few weeks!   My experience supporting other families, is that the package is short term, and then you are offered follow on support, but, if capacity is very short, will long term care be offered to you?  I would hate for you to be let down all over again.

    Should your father be admitted for initial care and support, the focus will come again to discharge, and, as the Hospice mentioned, the right level of care will be on everyone’s agenda.    this is your opportunity to make sure that Dads hospital team are fully aware of the challenges at home, and ask if they plan to bring a Social Worker on board?   They will hold Discharge Meetings (you should be invited) to look at all aspects of discharge and to make sure Dad is safe once at home.   If you feel it won’t be safe, (even after they have explained their plan) please be bold and let the team know:  they can’t discharge a patient into an unsafe situation.  Should the 24hr care I mentioned, be an option, you may ask the Social Worker and the Discharge Nurse to explore this idea.   Also if you feel a Macmillan Nurse (as mentioned above) is important within Dads care plan, you can ask for a referral at this time. 

    Going home from hospital

       at some point how care will be funded will come into the conversation.  The Age UK link I posted above will offer you support with this, but you are also welcome to speak to our Welfare Rights Team here at Macmillan. This team will help to support your Dad in terms of looking into any benefits he may be entitled to which may help towards care.  In this instance as personal information will be shared, I would suggest a phone call is the best option, you may need to have Dad on the initial call to give consent.  The link below will give you more information about this service including opening times and ways to contact them.

    Macmillan Welfare Rights

    Most people have to pay something towards the care they receive. But some people with ongoing significant health needs can get their care paid for through NHS continuing healthcare. You may like to explore a Continuous Healthcare Assessment either straight away or prior to hospital discharge again a Social Worker and a member of Dads Healthcare team can help.

    You may find this link for Age UK will guide you.

    Age UK NHS Continuing Healthcare

     It’s understandable that you are feeling unwell.  Navigating through this system is so difficult and at times its easy to become exhausted and overwhelmed.  It’s so important to look after yourself, and with that in mind, you may like to reach out to Penny Brohn – of course along side Macmillan.  They understand the emotional and physical stress of caring for someone with cancer and offer a range of emotional and well-being support: either via a live online platform, or recorded workshops such as relaxation, meditation and tips for insomnia.

    Penny Brohn. Cancer wellbeing for everyone

    Again I am mindful that I may overwhelm you with information.  Please feel that you can come back to us again, either here, or on the phone, email or webchat.


    Take care


    Macmillan Cancer Information and Support Advisor