Need morning help - advise: Lung... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Need morning help - advise

Beatless profile image

Lung cancer has gone to brain leaving my right side very disabled.

I'm looking for morning help on washing/dressing.

Advise please on how to get the help I require

Thanks

20 Replies

Sorry to hear that. If you haven’t already, I think you’ll be entitled to Personal Independent Payment which will give you the funding to get someone to help you in the morning.

Beatless profile image
Beatless in reply to Ellejayb

Thanks I've looked at the phone umber for Personal Independent payment but it says you have to be under retirement age do you know reson for this?

It’s worth phoning your local social services department and asking for an adult care assessment someone will assess what you need, advise re benefits and help to provide homecare so that someone can come in and assist you with washing and dressing. Hope you can find the phone number. If you are desperate over this weekend they have people on call who can advise.

Depending on finances some people have to pay and others not, but they will definitely be able to advise.

If this doesn’t work which hopefully it will ask your GP or MacMillan Nurse if you have one as they will know how to access your local services. There is definitely help out there, it’s just getting into the system to be assessed for what you need

PIP is for people under pension age.If you are on pension then you can apply for Attendance Allowance. The payment is about the same.

Enhanced amount is about £153 per week and is tax free. It does not matter how much you earn or what savings or property you have.

A Macmillan or Maggies nurse will assist you with the form.

Beatless profile image
Beatless in reply to Palpman

What is best number to get Macmillan nurse advise pleas

Palpman profile image
Palpman in reply to Beatless

I went to their office in our local oncology center. Very helpful people. The nurse also filed my wife's DS1500 form with DWP on her behalf. Her application was expedited due to the severity of her condition.

The general MacMillan number is 08082395065. I don’t know if they’re 24/7 but I’d imagine they are. If not, I’ve got a 24/7 MacMillan hotline number for the Royal Marsden 02089156899. Even if you’re not with the Marsden, I’m sure they’ll give you a number to call. Wishing you well and hope you get the urgent help you need.

My Lung Nurse sorted this out for me and Macmillan were extremely helpful. Best of luck x

I'm so sorry it's gone to your brain Beatless, my NSCLC Stage 4 has too and made it difficult for me to walk on my left leg.

You don't have to be under retirement age for PIP, I get it I'm 66. Talk to your Macmillan nurse and lung specialist nurse.

Just to reasure you I had radiotherapy to my brain last December and a brain scan in February showed some of the cancer spots had gone, I had 4 in all. Go this Friday to Christie's for another brain scan to see if the other's have. I don't know whether the use of my leg will return, it's bad enough having the lung cancer but the disability has taken any other joy out of my life. My passion was cycling, that made me mentally stronger.

Hope this helps

Wishing you all the best

Beatless profile image
Beatless in reply to Tike3

Tike3 Plus all others who have replied.

It's my right leg that has gone, can only walk with walking frame. Just waiting for Addenbrooke hospital to state what they will do.

How long do I wait?

Will contact Mc Million nurses for help

Thanks to all

Palpman profile image
Palpman in reply to Beatless

It depends on the type of illness and life expectancy.If you are on a pallative treatment or deemed to not survive 12 months then your application is expedited. You will wait about 4 weeks for the first payment.

If you are on a curative treatment then the wait could be 3 months.

The gov website clearly states that PIP is only for new applicants up to pension age of 66. Thereafter it will be Attendance Allowance and not PIP.

Palpman profile image
Palpman in reply to Tike3

People that were on PIP before pension age of 66 will continue to receive PIP.New applicants over pension age must apply for Attendance Allowance and not PIP.

Hi Palpman

I wasn't on PIP before age 66, waited about a month and received it. Never been on Attendance Allowance, seems every situation is different. Oh, and I've not been given 12 months to live!

Palpman profile image
Palpman in reply to Tike3

The 12 month thing us only to expedite the application. If it does not apply to you then you have a longer waiting period.My News Feed says people are waiting 3 to 6 months for the application to be processed.

Perhaps you are in Scotland where it is processed differently.

Quote from gov.uk

Eligibility:

You can get Personal Independence Payment (PIP) if all of the following apply to you:

you’re 16 or over

you have a long-term physical or mental health condition or disability

you have difficulty doing certain everyday tasks or getting around

you expect the difficulties to last for at least 12 months from when they started

You must also be under State Pension age if you’ve not received PIP before.

If you live in Dundee City, Perth and Kinross or the Western Isles, you need to apply for Adult Disability Payment (ADP) instead.

If you’re over State Pension age, you can apply for Attendance Allowance instead. Or if you’ve received PIP before, you can still make a new claim if you were eligible for it in the year before you reached State Pension age.

Tike, thanks as you will be with us for some time I look foward to seeing your posts!

Tike3 profile image
Tike3 in reply to Beatless

HI Beatless

Do you think Addenbrooke will be able to help you walk again perhaps with an operation.

When I asked my consultant at Christie's she said she didn't know if I would ever walk again, that broke my heart, surely there's something they can do. I have a walking frame to and a wheelchair. She thinks it's the brain cancer.

Will you let me know what they say when you go to Addenbrook.

Sending love

Pam

Beatless profile image
Beatless in reply to Tike3

Pam, Trying to add you as a "friend" but can' see how to do it, advise please, as we have very similar conditions, John

Tike3 profile image
Tike3 in reply to Beatless

Hello Beatless

When I send you a message press on my picture, it's a lake. Then a button will appear, press it and it changes to following/ friend, you can easily unfollow by pressing again we can private message too if you prefer.

My real name is Pam and on the forum Tike3. Oh, your John!

Yes, very very similar condition aren't we.

Best wishes Pam

Are you under the care of your local hospice? If not ask your gp to refer you. They will help you and may be able to organise care at home. This might even be free on the NHS if you are terminally ill. Re Pip, retirement age has gone up and if you are old enough for state retirement pension then my understanding is that attendance allowance is the one. Good luck. Mags x

Hi Beatless

Sorry to hear the cancer has gone to your brain along with your challenging symptoms.

It may depend on where you live for the home assistance you receive. Your GP should be able to refer you to social services who can do a home assessment for your personal care and any aids that may help you.

This link from the NHS provides information on how to get help at home from a paid carer in England: nhs.uk/conditions/social-ca....

You could contact your local council who will do a needs assessment.

It is free if you live in Scotland and it is the council that would assess this and determine your need for assistance. careinfoscotland.scot/topic...

We offer a one of grant payment of up to £150, you can apply for this online through this link: roycastle.org/patient-grant...

alternatively you could call us on 0333 323 7200 for someone to assist you with the application or your lung cancer nurse specialist can help you with the form.

This link is to our booklet on brain metastases: roycastle.org/app/uploads/2...

If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

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