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Myeloma

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Myeloma and financial benefit help

ButterflyinRemission

Hello

My cousin has been diagnosed with smouldering Myeloma and at the moment they are monitoring her.

She has had to cut work down due to pains and fatigue.  She is getting ESA at the moment but they've asked her to go along to an assessment.  

Has anyone got any experience of this that may help.  What does she need to take with her, what does she need to say?  From my experience (I have leukaemia) they are not very well informed and decisions don't usually go our way.

Also is there any other help she can get?  Think she tried DWP but as she's not yet having treatment they declined it

Thanks

Anna

ButterflyinRemission

find more about my experience of AML at butterflyinremission.com
Thehighlander
Posted by

Hi Anne , just jumping in past.

She needs the help of professionals - I was surprised when we went and talked with our local hospital Macmillan/CAB financial/benefits adviser - we thought we could not get anything but they had the knowledge to open doors.

Maggie’s Centres have financial/benefits advisers also and you can also use the Macmillan Support Line Services on 0808 808 00 00 as this free free service covers Practical and Financial Support mostly open 8.00 to 8.00 but check the link.

I have had both office based assessments and in-home DWP assessments over the years. It is very important to be prepared for these assessments, understanding that the language used at these meetings is used as a major part of the assessment. There are no real medical tests done.

So she has to view all her answers to be based on 'worst days' and never offer any information unless asked a direct question.

I always had a copy of all the answers I had put in my Contribution based ESA and PIP paperwork (these were the only benefits we could get). I used the paperwork to remind me what had been said...... the wording were based on the experience of the advisers.

But talking with a benefit adviser can help a lot.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

ButterflyinRemission

Thanks,

this is helpful, she was turned down for PIP and from my experience mine was stopped after a home visit even though I was still poorly (but that's another story!)

She knows about all the official avenues of help, I was hoping to pick up any hints of tips from people's personal experiences... I'm afraid I don't have much faith in these people

Anna

ButterflyinRemission

find more about my experience of AML at butterflyinremission.com
Thehighlander
Posted by

Hi Anne, a very high percentage of initial PIP applications get turned down and also following the first home visit review....... with many being approved on appeal - so she must not give up but the wording of the appeal needs some professional advise.

But as you know, PIP is very subjective. I was in a bad way, I was in a wheelchair then onto walking sticks, could not drive, could not hold hot plates and was not eating, could not even put my socks on and just managed to get the minimum 12 points..... I am sure that standard ESA is not means tested and contributions based ESA just needs the medical team to sign it and say the person can not work and the form does not have to be completed....... but it is taxed !!!!

Our local CAB office does pre assessment couching sessions for cancer patients.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

ButterflyinRemission

Yes I was in a bad way too but still got turned down, its something that's been investigated by Bloodwise due to the fact that they even send an assessor out to a patient with AML.. I've heard from people who've been vomiting from chemo and still undergoing chemo yet they send an assessor, one time they sent one to visit a patient in hospital... anyway that's another issue for another day.

She has already been getting ESA and as you say it has been signed by a Doctor but they now want her to go for an assessment appointment.  This is why I am looking for any information that may help her... I really don't see why they need to see her anyway... with her diagnosis and Doctors confirmation ... the system is not helpful to cancer patients as far as I've seen.. and I speak to a lot of people.

Thanks

Anna

ButterflyinRemission

find more about my experience of AML at butterflyinremission.com
Thehighlander
Posted by

Anne, the system is certainly not supportive of people in a time of need.

Lets hope you can get some more information x

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela