How to access care for elderly dad who lives alone and diagnosed with cancer

OP I don’t really have much in the way of practical advice, but what I would say is please look after yourself in all of this. I know you want to be a good DD and support your DF, but it can’t be at the cost of your job or mental health. Of course your DF wants you to support him rather than have carers or be in a home, but you will burn out quickly with what you are doing. I would try and take a step back and do those things that push for more professional intervention and funding.

I was just about to say, look at CHC funding for full time care - I’m in the process of fighting for this for dad as I believe him to be eligible. Best to get a referral from your hospital team, GP, or district nurse. Our assessment will be done by the district nurses next week.

the pathway we’ve taken looks like this:

surgeries/radiotherapy > home, supported three times a day by carer (initially council provided but stepped up to private as I’ve been able to help him financially)

Falls due to frailty (he’s lost all weight and all muscle tone) have landed him in hospital for weeks at a time, so care at home stepped up

Further falls/ deterioration led us to try two weeks at a care home to see if he’d be happy to move to one (we funded this again and were told by the care home that we needed 18 months of private funds if we wanted him to move permanantly. After that point you can apply for council funding which will cover much of the cost. The weekly fees are frightening.

If I were you I’d be contacting your district nursing team and being very firm about your situation and need for more support for your dad at home. Do you have a sympathetic GP? I don’t know what the pathway to a care home looks like through council, but I know there is funding available if you have less than £23K in savings - but best approach then know so they are aware of his needs and financial position. For us this is the adult social care team.

in the meantime, things that helped dad in the earlier days:

Pureed foods (either from a supplier or done in a nitribullet). Dad liked mash and cottage pies etc.

Fortisips to boost calories

Any pudding/ ice cream that he can manage - calories are king, don’t focus too much on nutrition.

Pill crusher for meds

Ultimately dad has been given a PEG feeding tube but we’ve tried to maintain his swallow function with the pudding treats he likes that are very smooth.

I feel for you OP I really do. My dad is just about to move home again following his respite stay at a care home and a further surgery, he has zero mobility and is non-verbal, doubly incontinent, and tube fed - it’s utterly awful but he keeps soldiering on. It’s a scary cancer as the effects are so life altering. Take all the support you can get- MacMillan etc, GP, district nurses. Be clear that he (and you) are struggling.

Take care of yourself as best you can.

Look at NHS Continuing Healthcare (CHC) and see if he is entitled to it

Be prepared to fight for it but do it anyway

If that fails, you can ring a local hospice and see what they advice would be to help you

OP, goodness we are in extremely similar boats. My dad has had mouth cancer, stage 4, lives alone, social housing, now needs 24/7 care - we are further along the journey than you. I’d love to connect. Feel free to DM me if you want to chat online. It’s utterly awful - in my opinion one of the cruellest cancers (I know they all are, but H&N cancers like these leave you so very very changed), and there’s a lot to navigate. You’re not alone.

With my Grandad & my Mum, I made it clear before they left hospital that they’d absolutely need help arranging before they were sent home. I made it clear what I was able to do. They both ended up going to like an inbetween/respite community care/hospital type place where they were assessed. Then carers/OT etc were arranged. Good luck op, it’s tough. Just be firm & don’t back down.

Contact social services for the above. And AA fast tracked to help pay for it. Now is his rainy day. Don’t let him turn anything away he might have to pay for due to cost and the assumption that you will do it all instead. Prepare yourself too, that the situation muddling along at home may not be sustainable for very long. Even with carers in and out, it will still leave long periods where he is alone.
Ex district nurse.

What does your Dad want? Does he want to go home with carers coming to see him or would he prefer to go into a care/nursing home?

I would just start an application for Attendance Allowance under normal rules if he has had difficulties for six months. then if you can get an SR1 form you can send that in to speed things up. I help people with AA forms as part of my job and have previously worked as a macmillan benefits advisor and whilst others may not agree, I think they award AA very easily especially with a cancer diagnosis.

Definitely get him referred to the district nursing team, they can keep him on the books for palliative reviews as needed.

Has he seen a dietitian? There is usually a specialist oncology dietitian. Try ringing the ward and seeing if you can make contact with them. They might suggest he sees a speech and language therapist as well, though problems at the oesophagal level can be a bit of a grey area for SLT.

I really feel fir you both. I wonder if he would consider Wiltshire Farm Foods delivery - the dietitian should have brochures and they are very good over the phone. There are other firms who deliver ready meals as well. Is there a Good Neighbour scheme locally, or ring Age UK for advice too?

If he is stage 4, terminal and has less than 12 months as his prognosis he is eligible to claim AA immediately, under the Special Rules (SR1). My FIL doesn’t have long left and his claim was assessed, approved and payments began within 3 weeks. If he hasn’t been given less than 12 months he will probably still be eligible but not under the special rules and they will start paying it in 6 months time. The MacMillan nurse completed my FILs form for him.

If he is for palliative care then he may be referred to the community palliative care team so they can monitor symptoms.
Contact adult social care for a needs assessment.
If he does not already receive a disability benefit then apply for Attendance Allowance ( assuming he is over state pension age ), he may be able to get it fast tracked depending on prognosis. Speak to his cancer nurse specialist regarding this. It can help him to pay for whatever he needs- carer, cleaned, gardener, aids etc.
Make sure things like power of attorney are sorted.
Age Uk have a huge range of factsheets on virtually every topic.

Thank you for this.

Quite the opposite. Many areas now operate a discharge to assess (D2A) model to prevent people sitting in acute beds on hospital wards waiting for an adult social care assessment.

Instead the NHS funds an interim care package either at home (reablement or a standard domiciliary package) or in a residential or nursing home and social services catch up with them wherever they have been discharged to within 4 weeks to complete the assessments for long term care planning.

The advice to 'refuse discharge until they have seen the hospital social worker' is out of date in many areas so it's always worth checking if you are in a D2A area before asking for a hospital social worker that may no longer exist.

Agree with being very clear and firm with anyone and everyone you speak to about what you will and will not be doing. No matter how hard or heartless that feels. This is the best way to get professional support for discharge.
In the area DM lives in there is a Home Assessment Team - health and social care: physio, occupational therapy, carers who assess and support on discharge. OTs saw DM in hospital and afterwards, absolute godsend.

I don't think it's a nurse that you need to be speaking to - they will change and there won;t be one with overall responsibility for his care all the time. There should be a separate team in the hospital dealing with what will happen to safely discharge but I can't remember what it's called.

It’s discharge to assess. They should be discharged to some kind of reablement placement or care home where their needs can then be assessed and plans made.

Bloody hell: "there's no longer a requirement to carry out a care needs assessment before you leave the hospital."

Are they trying to get out of intermediate care/re-ablement?

Given what the OP has said, I should hope that her father is entitled to intermediate care.

Here's a useful guide from Age UK on what should happen when a person is discharged from hospital Leaving Hospital