Help navigating different support services

[NotMeNoNo]

Brief outline: elderly PILs in early 80s. MIL with sight,/mobility problems, had radiotherapy last month for cancer.
FIL who had effectively been her carer during lockdown, suddenly developed a spinal tumour for which he's just started chemo.
So they have plunged from just managing to both ill and needy in space of weeks. But no hospital stays so no care assessment.

They have no help or benefits at all. My SIL who lives close has been helping ad-hoc but it's escalated beyond what she can manage, we are 30mins away & doing what we can. We feel external help is needed but don't know what to ask for. Mostly medical (dressings, pain management, anxiety) but also practical eg shopping, getting to appointments.

These are my questions

• Macmillan helpline said they should have help from community palliative nurse team, can we force GP to refer them? How long does it take?
• is NHS continuing healthcare something different?
• we have got FiL to contact adult social care , what can we expect from them?
• can support be obtained privately eg nurse or carer visits or respite?
• am I even asking the right questions?

We all want to help but me, DH, SIL and BIL still work and have dependent children and none of us has an accessible house. The PILs are so unwell they can't cope with the complexity of decisions or accessing help themselves.

Any pointers on where to start would be massively appreciated.

I would suggest contact gp urgently who can get help in place from district nurses etc very quickly.
Then adult social care should have a helpline via county council website for an urgent referral. They can either arrange care quickly and provide details of care companies who can support.
Also carers uk or age uk may have details of local services/ volunteers.
Good luck

Thanks.
I just have this sliding feeling that by the time we've worked it out things will already have got worse, but hope we can stabilise the situation anyway.

NHS Continuing Health Care is non-means tested funding, which pays for essential care. It's not a form of care in itself, and it's only usually awarded to people with very complex health needs.

They might each or both be entitled to Attendance Allowance, it's a benefit payable to elderly people who need care/ support.
Currently it's £60 or £89.60 a week, depending on if they just need help through the day, or night, or if they need help through both day and night it's the higher rate.

It's not means tested and you can fill the claim form out for them. There's a freephone helpline 0800 731 0122.

contact their local carers' centre, sometimes called princess royal centre.
this is for family carers.
they should have been claiming attendance allowance for MIL already.
now claim for both of them.
may have to start at lower rate, buts asap claim for higher rate.
they need a care needs assessment, by local social services.
this may take a while.
you may with to contact a care agency and pay for some visit.
bluebird have a good name.
they should also have a home visit from community occupational therapy; this can be organised through GP.
they can get adaptions, grab-rails etc.
it is a minefield. i sympathise.
by the way forget about continuing healthcare. it is very very difficult to get, and only for severely disabled with complex needs. and many of them don't get it.
you may need help filling in the attendance allowance forms. you have to use the right jargon, know the pitfalls.
try local charities, support groups, carers' centre.
good luck.

Age UK are fab at helping sort all this out. They were very hands on with our old folks (eg. filling in forms to claim allowances, knowing which ones they were entitled to etc). Also Macmillan/Marie Curie/ hospice nurses know all about this, and often will work behind the scenes to expedite things for you.

Thank you , we've now been in touch with Adult Social care team and Age UK, plus a visit to A&E (fall) has got the hospital chasing for district nurse involvement. We feel like a bit of a team is forming around them now, at least.
Attendance allowance has been picked up too, thanks.
I'm going to contact GP on their behalf for palliative care team as directed by Macmillan.

i wish you, and them, all the best.

Thank you
After going round the houses a lot we have eventually been referred to community nurse team. Turned out all of us helpfully giving lifts everywhere meant they weren't logged as housebound or even told at-home support was available.

However they clearly need daily visits to change dressings at the moment, resulting in them getting in a state today as initial assessment was yesterday and first scheduled visit is tomorrow.

We're trying to step back so the NHS can see the need but it's a fine line as it seems they have to be in obvious crisis to get help.

Yes, that’s about the situation. When dad needed his dressings changed daily the first suggestion was that I should take him to surgery daily. Sounds trivial enough, but the getting a barely ambulant person ready, into the car, into the surgery waiting room, into the surgery itself meant I would be spending three hours daily even if I got away without the obligatory chat. And of course I was retired so what better use of time could I have?

In the event, sense prevailed, and the district nurse came out.

@NotMeNoNo I’m sorry you find yourself in this situation.

Lots of good advice already. The only thing I would add is, having had a poor experience with Macmillan, don’t be shy about holding them accountable. The fact that Macmillan is a charity is misleading. The ‘Macmillan’ job title stands in perpetuity after any ‘charity’ funding has gone. I think it tapers to zero after 3 years with the NHS taking over funding of the role. This annoys me as I think it makes a difference to patient and family expectations. I felt very let down and angry with Macmillan concerning my late father. They promised a lot and delivered little. The internet/their Facebook is littered with similar tales too. It can obviously vary by area but my feel is that they serve a particular demographic and elderly cancer patients are not it. Macmillan seem to be a third party service provider in the NHS, the ‘charitable’ status muddies the water.

@MereDintofPandiculation exactly. Except none of us is retired, we work full time!

Does anyone know about transport to hospital appointments/clinics? If family can't take them, is it worth trying to get some kind of Dial-a-ride or Patient Transport involved, or should they just book taxis if they can afford them?

Neither of them can walk more than 100m, that's hobbling with a walking frame, and doesn't get them to the nearest bus stop.

Also MIL is 80% visuallly impaired and can't go anywhere on her own at all.

Yes. The GP should be able to arrange hospital transport or at least give you the contact details.
A weekly cleaner would be a good idea to get used to the idea of someone popping in regularly. And gardener?
Shopping can be done online and delivered.
Pharmacies can arrange age medication in blister packs and deliver.
Age Concern may be able to provide a list of reputable 'handymen' for odd jobs.
Social service referral is the priority though, although if PIL refuse and say they can manage very common when they realise they may have to pay and expect family to do it they will leave you to it. If they can afford private carers then crack on.
Power of Attorney is also essential, although there's a five month wait I believe at the minute for them to be processed.
In all this, remember, this is what their rainy day money is for. To ensure they are safe and cared for in their latter years. Be very careful not to get drawn into providing more assistance than you are reasonably able to give. There are many threads about the long term implications of that.

I have to say half the battle is against their particular ways of doing things.
They have got into online shopping but due to Covid (dating back to first lockdown) they get the driver to leave shopping in the front garden. But then they can't carry it inside and make my SIL come round to do it.

We have explained the driver would bring it in and unpack onto the kitchen table to put away one tin at a time, but they won't budge.

This sort of battle repeated in lots of matters!

I suppose it's the usual story - they won't see the need to change their way of doing things until they've felt the consequences. One week of SIL being unavailable should do it.

Well they can't make her? She chooses to do it. She holds all the cards. So SIL says no.
I was a district nurse for many years and saw the state some families got in over time. Be warned.

Thanks so much I don't want to drip feed but my SIL did in fact step back for various reasons and we are on about Day 4 of that week. A lot of emotional phone calls. I think we have finally got community nurse team on board after they rang GP this morning & managed to get a home visit.

I mentioned getting registered for hospital transport today and they still said "oh well at a push there are people we can ask for a lift" . (No idea who). It's not the point, the service is there, they just need to engage with the system!

In my experience, hospital transport is not much use. Try the Red Cross. You have to pay and it's more expensive than taxis but has the advantage that the driver is happy to take them. It sounds as if this would suit your parents better than a taxi . I think demanding SIL comes round may really be a way of getting a visit/some attention. If you contact a local Care Agency, you will probably find they provide an array of services including cleaning/housekeeping and accompanying to hospital. An ideal would be the same housekeeper coming in say 5 days a week and family/friends looking in at weekends. If they are churchgoers- get in touch with the church. They often have people who visit housebound/care home residents. Local Authority often fetch bins in and out if asked. Do they have a Power of Attorney?

If anyone has hospital transport sussed please share! I’m in a similar position. Parent can barely shuffle to car and out of it. Needs more than a lift, they need help to move around the hospital. I work FT with a primary school age child. I do my best but would love to know how lifts work when appointments can be hours delayed or trajectory open ended (eg scans or blood tests of prescriptions from hospital pharmacy added on). Yes, carers offer this service however again, I have no clue how practical that is as carers are booked for, generally regular, slots so clinics that run hours behind or tests that get added last minute are a no. Also, the agency I use is £29 an hour so that’s quite for expense even if they are available. One thing to did do was get my parent registered as house bound with the GP that means things like covid vaccines come to her.

Ah thanks. We are in contact with Age UK.
I was going to ask them if any transport options locally. The PILs aren't short of money but may need a bit more help than a standard taxi. They have loads of appointments from all day chemo sessions 20 miles away, to local clinic visits.

No POA, it's on our list when we are out of crisis mode. I've noted all these suggestions, since I started we have got details of care agencies, so that will be a next step.

Yes we have just got them logged as housebound.
I have spent the last 7 years battling the SEN and school/camhs/autism system and now we have to learn a whole new thing for elderly care. Honestly I know we are lucky to have them still with us but I can see challenges ahead.

Hello Restzol my personal experience of hospital transport is the place you have had your appointment phones and orders hospital transport when your appointment is finished.

Don't know where you are in the country, but patient transport can be awful (S/E - hours spent waiting to be collected to come home)
Do they have a local volunteer group that drives people for a small fee to appointments? All villages around here have it. You book, get taken, then ring for them to collect you at the end of the appt. Our local hospital even allows for free parking for them. Some of the volunteers will even help with wheelchair pushing to the right dept.