Devastating news - does anyone know what I can do about work?

[Whistlersofskye]

My father has been diagnosed with a brain tumour and will need surgery and chemotherapy. He lives alone and I’m an only child so there isn’t anyone to help care for him.

I work full time, office based but could potentially work from home if allowed. I need to be around to care for him, is there any kind of law on my side that says I can work from home to be around for him (I’d move in with him) or maybe could I have time off to care for him? Is this usually unpaid?

I work for an employer who isn’t very flexible or family friendly so I know there’s no way I’d be able to just do this unless there is some sort of legislation that will work in my favour.

The other option will be to get carers in but my father has no money and I couldn’t afford to pay for them. Not sure if they’d be NHS?

This news has come out of the blue and I don’t know where to start. Would MacMillan be of any help with this? Any advice would be greatly appreciated

Yes GP will supply a fit note!what’s your point?
Shes entitled to defined carer leave but it won’t be enough for the day to day ADL and health needs he has as result of illness
Criticism of fit notes is the inconsistencies in duration and reason for issue

In your position I would get the doctor to sign me off work with stress for a few weeks/months while you get stuff sorted. You'll then get sick pay and won't need to worry about losing money while you get support in place. That also puts you in a stronger position to request working from home when you return.

Months off?You don’t know what her work pays for sick or when it reduces to SSP?
Going off sick for months initiates sickness absence and trigger HR policies - potentially detrimental in her job

So sorry to hear about your dad.

Do you get full pay when off sick? If so I would get signed off by the GP in order to take care of your dad.

I’m hoping your work would be more flexible in this situation

So very sorry to hear about your news. My dad also has a brain tumour, also an only child although he doesn’t live alone. Your dad will be eligible for attendance allowance and our clinical oncology nurse was invaluable for advice on this and lots of other things. There will be lots of information coming at you fast right now but your clinical nurse specialist can answer lots of questions. Brain tumour charity also has lots of stuff and there’s an incredibly supportive Facebook group I found if it’s glioblastoma which my dad has. Presumably lots of others too. I found being able to ask questions to people going through the same thing was invaluable. Much love xxx

The Carers Uk website is really helpful. Best wishes

My DM had cancer diagnosed quickly, sadly passed away a few months later. If your dad is having treatment, I would thoroughly recommend you seek a full support package for him so the basics are taken care of (washing, dressing, toileting etc). Even with a full care package, hospice nurses, fantastic GPs, district nurses, there was still so much fire fighting, advocating and non-care jobs to do that without the basics covered I would have struggled. I too worked full time, luckily had a fairly flexible role but I did manage to mainly work full time hours during the week around caring for mum over a four month period. It nearly broke me. There was no official allowance for time off, it was all good will.

In essence, get as much external help as you can. If you give an inch to the care system, they will take a mile so stand firm and if he has no resources, they should sort everything out. Let them, then you can focus on taking some time out to do the above and beyond stuff which maybe could be done around your job.

Also, do you have POA for him? If not, might be worth sorting. Also make sure you can speak to the GP on his behalf.

I should also say I’m working now, and he has mum but I had 8 weeks signed off in the summer to process shock diagnosis (dad is terminally ill, even with the op/radio/chemo) and with two kids and helping them through their own trauma and treatment plan. My employer was incredibly supportive though, I hope you’re ok and have people to support you too - that’s so important xxx

Macmillan have some excellent leaflets and advice, people posting above are right. There is also Marie Curie.
Good luck. He's lucky to have you.

I'm so very sorry OP that you're having to go through this. When my dh had to have life saving surgery for stage 4 cancer I requested unpaid leave from my employer to care for him, but I was told no and that I would have to resign. When I told my gp he promptly signed me off with stress, so they ended up having to pay me sick pay for 3 months rather than allowing me unpaid leave! If you've an understanding gp it might be worth speaking to them. Also speak to MacMillan - they were a great help to us

I am really sorry OP. I have been through this. You are sadly entitled to nothing. Your employer can be nice and allow you to work from home. You can sign off sick, although if you only get statutory sick leave that may be impossible. Or you quit and survive on carers allowance and universal credit.
You only get carers allowance if your income is very low, so if you are off sick and still getting paid you will not get it.
The entitlement for carers in this country is very poor. So most people just work, get carers in, and manage as best as they can. It almost killed me.

I found MacMillan worse than useless, but your local one may be better. I found Maggies Centre much better.

Join a trade union if you haven't already for help making arrangements with work.

You may need / want to ask questions about prognosis to help your planning. They may not be able to answer till after the surgery / if your dad doesn't want to know Sometimes brain tumours can be really fast growing and people die quickly. Others aren't.

Tell your GP you are becoming a carer - they should offer you a 'flu vaccine+ flexibility in appointment booking.

An OT referral would be useful re equipment that might help your dad at home / help you with caring for him.

There are some brain cancer specific charities too who may have additional/ different help to Macmillan.

It's worth your dad looking at lasting powers of attorney and/ or at making an advance statement to refuse treatment.

@Whistlersofskye doesnt need to give up or reduce work hours. Her dad is eligible for FREE HomeFirst care package and then get an assessment for ongoing POC. Liaise with inpatient the oncology team regard what help he will receive

All this advice to get signed off work for weeks months to be a carer is really bad advice. It puts op in position of having to manage sickness absence too and potentially detrimental to her job. Just because some of you got full pay on sick leave doesn't mean op will - she might get SSP.

I am very sorry for you OP & your father. I have been in a similar situation recently (still in it) so I will tell you what I have found out/done - it may have already been said as I haven’t read everything so I apologise if you’re reading it again.
My DSF was diagnosed with Motor Neurone Disease in August last year. He’s 80 & has taken hold of him very quickly. I apologise again if I sound cold but I will tell you about the practical things I have managed to do & you may want to look at trying to do to. If his diagnosis is terminal and they think he may have 12 months or less to live, get an SR1 form from his doctor. This will help leapfrog many of the forms that will need to be filled in. Get the attendance allowance - there are 2 tiers, if you get the SR1 form he will automatically qualify for the higher amount & it can be back dated to date of diagnosis. Also you can apply for a disabled badge with the SR1 form - even if he doesn’t drive it can be used in any car he is in. Get Power of Attorney if you don’t have it already. I found out that this doesn’t automatically qualify you to have the right to have his doctors talk to you about his care/drugs/doctors appointments etc. You need to get a letter from his medical practise that he signs authorising them to talk to you about him. This is really important! Write everything down - I have an DSF note book - with his hospital number, NHS number, DoB etc. I write everything down when we have meetings with anyone from his care team as there is just so much to remember. And if i think of anything i jot in down to sort out later. It now goes everywhere with me. If he is still driving call his car insurance & tell them. If he had an accident & it wasn’t disclosed it might invalidate his insurance. Get him on all of the services priority list (water, elec, gas). Give everyone he deals with your phone number. Get a key safe on the outside of his house. Talk to MacMillan - they are amazing - they may be able to sort out a CHC form which can lead to free care if/when he is receiving palliative care. What did your dad do for a career? There are many charities that have funds to help ex- engineers/farmers/doctors/military service personal/you name it… do a Google search & you’ll be amazed. Get an alarm he can wear in case he falls (might not want to wear it yet), get on line banking sorted if he hasn’t got it already, make sure you have access to it, get on line food shopping sorted if he hasn’t already, you can then order food for him.
In addition to DSF having MSD my DM has dementia & I have arranged a carer to go in for half an hour every day to go & see her & it costs about £20’ish per visit. If you get the attendance allowance sorted out he can maybe you could use it for that?
Work have to give you some paid time off - looks likes that has been mentioned plenty of times already. I believe you are also entitled so unpaid leave as well if necessary. You could also discuss flexible time maybe? I have been open & honest from the start which has helped me - every company different of course.
I wish you strength - you’re going to need it.

Good post,very thoughtful

Thanks to you all for responding, it’s so very kind of you all. Dad has a glioblastoma. It’s very fast growing and he’s 75 so no spring chicken. He is happy to have surgery but the doctors have been very guarded with the prognosis as there is no guarantee they will be able to remove it all.

My line manager is aware and has had a look at the company policies and it appears that I can have some time off for dependents but it is unpaid. I don’t want to have to go down the route of sick leave as I work in a company that have had lay offs and that would leave me being next out the door.

I think I panicked initially but can see now that hopefully there will be some help from the NHS / macmillan once he’s ready and able to be discharged, whether it is to a care home or back home with some help.

I have a generous annual leave allowance so may take a day a week off for a number of weeks and maybe ask to WFH one or two days.

Dad was a factory worker so there is no charity that can help, my mum died 15 years ago so he’s been used to being on his own and will be wanting that independence again - I hope he revivers enough to get it.

Sorry about your Dad. After an operation Hospital usually contact SS to arrange carers foc for 6 weeks when returning home but it's a maximum of 4 times 1/2 per day after that it's means tested

I'm so sorry you're going through this.

Apply NOW for carers allowance as you are essentially,his carer. I can't advise on your employment as I was in a good enough position at the time to give up work. Look at government websites and especially speak to macmillian. They really know all about it.

Replying to @croydon15 inadvertently tagged @Loudandy75
NO that’s not correct - a continuing health care assessment can provide a free POC if he is assessed as having severe care needs. If assessed as having eligible needs it’s a free POC This is paid from ICB

The assessment is undertaken by MDT and covers clinical areas
HCP assessment will consider individual needs under the following headings:

• breathing
• nutrition (food and drink)
• continence
• skin integrity (including wounds and ulcers)
• mobility
• communication
• psychological and emotional needs
• cognition (understanding)
• behaviour
• drug therapies and medicine
• altered states of consciousness
• other significant care needs

These needs are rated
priority
severe,
high moderate
low
no needs
If you have at least 1 priority need or 2 severe needs, you can usually expect to be eligible for NHS continuing healthcare

talk to the inpatient oncology team they’ll complete the initial assessment

She’ll be earning too much for careers allowance.

The recovery rate for that type of tumour isn’t great, is he sure he wants to put himself through surgery and chemo? Have they said how much longer it will give him?

Lots of good advice with the very first response being a good one. Pace yourself- I think you are now you have had time to think. Remember there are lots of people
with no one. You don’t have to do it all.

Like a pp, I had a terrible time with Macmillan. So much so I do not donate to them now. I do know others who have valued their input so it can definitely be a mixed experience. For more support and advice you may find the elderly parent board on here useful.

NO that’s not correct - a continuing health care assessment can provide a free POC if he is assessed as having severe care needs. If assessed as having eligible needs it’s a free POC This is paid from ICB budget
The assessment is undertaken by MDT and covers clinical areas
HCP assessment will consider individual needs under the following headings:

• breathing
• nutrition (food and drink)
• continence
• skin integrity (including wounds and ulcers)
• mobility
• communication
• psychological and emotional needs
• cognition (understanding)
• behaviour
• drug therapies and medicine
• altered states of consciousness
• other significant care needs

These needs are rated priority severe, high moderate low no needs If you have at least 1 priority need or 2 severe needs, you can usually expect to be eligible for NHS continuing healthcare @Whistlersofskye talk to the inpatient oncology team they’ll complete the initial assessment