Blood Cancer - Support and Benefits

[Erica]

This is a space for everyone to share their experiences of support and benefits availability and claiming.
I am starting it off with the information from the Blood Cancer UK website
Blood cancer: money and work | Blood Cancer UK

[Rammie18]

Free prescriptions

Not sure if the root I went through is the correct way or most efficient but this is how I got mine.

You request a form from your gp/hospital specialist.

Complete the form

Send off to your gp/specialist to stamp/sign

Wait patiently for your NHS exemption card to be delivered

Then whenever you get a prescription over the page tick the “E” box and sign and boom free meds!

[2DB]

I did exactly the same thing
I contacted my GP, form was collected for me
I signed it and ticked the cancer box and it was taken back to GP
Exemption card didn’t take long to arrive

[Iain]

Hi all.
My following ramblings expand from a thread already running with @Erica , @2DB and @Ubbums12 initially including to Blue Badge applications and the relevance of PIP mobility allowances.

They solely reflect my current understanding and thoughts. Are you comfy? Then here goes:-

Massive changes to personal independence payment (PIP) are/were being consulted on in the Modernising Support Green Paper as published by the previous government.

This includes plans to “reform the disability benefits system to ensure they’re targeted at those most in need.” There are proposals to move away from a fixed cash benefit system towards tailored support. The consultation on the proposals runs for 12 weeks, until 23rd July.

The proposed changes include:

• Ending PIP assessment for people with the most serious health conditions, including those with terminal illnesses.
• Changes to current descriptors, especially those relating to aids and appliances.
• Changes to the qualifying period for eligibility for PIP, to ensure it is only available to people whose condition will be long term.
• Considering if PIP should only be available to people with a formal diagnosis by a medical expert.
• One-off grants instead of regular cash payments for some claimants who need adaptations or special equipment.
• Vouchers instead of cash payments.
• Reimbursing claimants who provide receipts for the purchase of aids, appliances or services.
• Providing people with lower extra costs due to their health condition with treatment, rather than regular payments.

The changes to PIP green paper, as proposed pre 2024 election can be seen at:-

Modernising support for independent living: the health and disability green paper - GOV.UK (www.gov.uk)

The former Government said that the Modernising Support Green Paper was to explore how the welfare system could be redesigned to ensure people with disabilities and long-term health conditions get the support they need to achieve the best outcomes, with an approach that focuses support on those with the greatest needs and extra costs.

The UK’s health landscape has changed since PIP was introduced in 2013 with the intention that it would be a more sustainable benefit that would support disabled people to live independently by helping with the extra costs they face.

However, the caseload and costs keep going up. There are now 2.6 million people of working age claiming PIP and DLA – with 33,000 new awards for PIP each month, more than double the rate before the pandemic. The Modernising Support Green Paper proposes reforming the PIP assessment so that it is more closely linked to a person’s condition and possibly removing assessment entirely for those most in need.

In a masterpiece of understatement, the previous government said:

“We know some people continue to find PIP assessments difficult and repetitive, and view the assessment as too subjective.”

There lays the current predicament for those explaining their Blood Cancer, and the physiological and psychological effects on their individual wellbeing and safety. The terminology and professional interpretations are also subjective.
We all have varying conditions and circumstance’s including our medical lead. some with consultant Haemo-Oncologists and others their GP, so who judges such as:-
Formal diagnosis by a medical expert;
Is it a long-term health condition, a most serious health condition or a terminal illness?

It is important to recognise that a Green Paper is a tentative government report and consultation document of policy proposals for debate and discussion. A green paper represents the best that a government can propose on the given issue, but, remaining uncommitted, it is able without loss of face to leave its final decision open until it has been able to consider the public reaction to it.

It is a potential precursor to law or changes in law. Until then, or if at all, the current law(s) remain in place.

In light of the recent change in Government we, as Cancer patients will need to observe and comment if any change in policy affecting us is reflected in this proposal Green Paper.

Now own up which ones of you dozed off?

Keep safe and wishing you well in treatment and recovery.
Iain

[Ubbums12]

Hello Iain, no, I didn’t fall asleep while reading this. On the contrary found it very insightful. Are the proposed changes good or bad for those needing to claim? Who can tell! Perhaps parts are better and some are worse. Perhaps it’s all worse. I tend to think the changes are targeted towards those claiming PIP for mental health. Certainly the past government seemed to indicate that was so because mental health can be so subjective and not obviously apparent. But I hear you say so can blood cancer be subjective and is a ‘hidden’ disease. Very true. But maybe one of the changes going forward will be that a diagnostic letter from a consultant confirming, eg MM or Waldenström macroglobulinaemia (WM) or other blood cancer will be sufficient to “pass the test” without further assessment.
We can hope. I do not intend to offend anyone with mental health issues here, I am simply being cynical as to the past government’s real intention with this green paper.
All the best Edwina

[Iain]

Hello @Ubbums12 ,
Points well raised. I first became aware of any proposed changes to welfare and health support from SCOPE and their role in mental health and their highlighted concerns over support for their ‘clients’.
I have in-law family with conditions such as PTSD, anxiety and depression.

With the potential of any of these, and others, that can reflect in Blood Cancer patients it cannot be ignored. The mental trauma of isolation through immune supressence, eg. Covid has/is clearly seen along with the vulnerability feelings of our different conditions.

Personally I don’t think you are being cynical in your thinking and the underlaying reasons for change and its not the wellbeing of the citizen.

Ironically, back to my earlier thread re Blue Badge applications I must consider my non-benefit approach is in-line with the Green Paper, in that;
a) The only monies changing hands is my £10 to the LA for admin charges;
b) My evidences come from specific medically competent persons (does that suggest previously any old ‘quack’ could be involved in my diagnosis and conditions?);
c) I receive a valued aid to my safe physical and mental wellbeing - a Blue Badge!

I am but a simple man with a simple mind, but again recognise we all have our own lives and needs regards support. I find this forum and other blood/cancer related support groups a valuable conduit for discussion and advice. Thanks to @Erica and the ‘crew’ for their support.

Now you all keep hydrated: where did I leave that bottle opener?
Iain

[Ubbums12]

We are all but simple people, so you’re not alone Iain. I, too, am finding great comfort and support from this forum. I recall reading in one of your posts that you go to Leicester Haemotology. That’s where my first appointment will be on 3rd September so hoping to see you there one day perhaps and we can put the world to rights in the waiting room. Meanwhile, looking forward to reading many more great posts.
All the best, Edwina

[Iain]

Hi, all of you considering the support and benefits that may be available to BC patients.

Firstly @Ubbums12, yes I do attend the Leicester Royal Infirmary, Haematology. A well respected regional cancer centre that also receives patients referred from other areas of the country. I’m being treated under a drug therapy programme through a randomised trial of Rituximab and Ibrutinib established by UCL/CRUK through Leics Hospital Trust and HOPE research.

Now back to the tale of the Disability Green Paper and will it progress, be amended and adopted, or binned?.

Disability Rights UK (DR UK) have presented a thorough analytic QA document in their response as a model. I’m sure other views are also circulating.

Their document can openly be found on the WEB at:-
DR UK’s Template Submission To The PIP Green Paper Consultation | (DR UK’s Template Submission To The PIP Green Paper Consultation | Disability Rights UK)

From this comprehensive consultation template their comments are, I believe worth a read. Amongst many thought provoking elements they suggest that:-

“The green paper takes a medical-model approach to the experience of disability and to the lives of Disabled people. Focusing on how our impairments may be “cured” or “fixed” through different interventions, ignoring the role of social security as social infrastructure, which removes barriers we face as Disabled people to participate in society. The introduction of any of the policies in this green paper would lead to even higher numbers of by attitudinal, institutional, environmental and information barriers.”

And don’t forget under the Equality Act Cancer is a disability.

Now its 00:45, so maybe I should read it again to beat my insomnia?
Take care guys, and I hope all this helps
Iain

[Ubbums12]

Well, Iain, I have read the Disability Green Paper following your recommendation and must confess I now feel rather naive in my previous comments about it. It is clear that the past government’s intent is to cut benefits without a care for those who need them. Not only is PIP for working age people affected, but I also understand that Attendance Allowance for people over state pension age is being stopped this autumn to be replaced by Adult Disability Payment (think this may cover both PIP and AA but not entirely clear). Either way, it is designed to make it harder to claim, looking to reduce the DWP bill. Yes, I’m sorry to say it treats those with disabilities like they are nothing more than scroungers. We can only hope that the current Labour administration will stop the paper, but no commitment to that has been made thus far. I would encourage anyone who can to oppose this Green Paper, the deadline to do so I believe is 22 July 2024.
It is sickening to think that human beings (ie those who commissioned this Green Paper) are capable of working towards a society where those who are in need are totally disregarded.
Rant over, all the best Edwina

[Iain]

Hi @Ubbums12,

Rants are allowed in my . Was it subject interest or the insomnia that got you through it, waking up so LOL?

And to think this thread all started on a question of Blue Bagdge (BB) applications and Monoclonal gammopathy of unknown significance (MGUS). Aren’t forums like this great .

You, @Erica , @2DB and all those reading may now get the drift from my previous ramblings where my thoughts lay with regard to the convoluted, collapsed, DWP/LA state-funded/rates (funded by us!) Welfare system ---- Nurse my Valium please!

I’m awaiting the Local Authority (LA) response to my BB application but in light of ‘a new Government playing politics’; the LA with no money or resource for the individual citizens care burdens; and the " we’re all well off and independent aren’t we following our great policies" I’m not full of hope.

As I’ve said previously my personal circumstances are regards safe independent mobility and currently not care or finance, but for many on this forum it’s a very different story for both patients and carers.

Now that’s my counter-rant done for now. And before anyone asks I’m a comparative political atheist with a slice of compassion, unlike, I fear politicians from all creeds. Moderated rants only! .

I’ll keep you up to date on my BB progress, but now the bigger topic and its many care/benefit implications are on a central thread (thanks @Erica) lets get informed and able to influence the ‘Numpties’ of Whitehall in what is legitimately needed when talking Blood Cancer.

Have a great weekend, with or without the Footie, keep safe.

Iain

[Iain]

Hi @Rammie18

Re my experiences re Prescription Charges over 70+ years are as follows:-

Childhood issues - Prescription Only Meds (POM) paid by patient unless a defined prescribed condition, eg Cancer. If a treatment was found as good but cheaper than the then prescription charges, as an Over The Counter (OTC) they made the advice/decision to the patient or guardian;

Life-long Eczema sufferer - expensive pastime - prepayment card promoted by GP. Significant financial savings;

then came

Type 2 Diabetes - free POM prescriptions irrespective of age and not solely for Diabetes Meds., Testers and Strips;

and then

By age default - excemptions for all POM meds with a Caveat. My trial drugs for Waldenström macroglobulinaemia (WM) are not NICE supported/funded. They are however provided by the trial funding scheme at no cost to myself.

I’ve always found Pharmacists most helpful.

Keep taking the tablets
Iain

[Ubbums12]

Well, I can hardly believe it but this morning I’ve been told that my application for a Blue Badge has been successful!!! I was expecting to have to fight for it through appeal, but miraculously I didn’t need to. I’ve paid my £10 and now eagerly awaiting its arrival through the post.

[Iain]

Good on you!
I still await the response to my application.

As a relevant aside, following this mornings Kings Speech, I’ve sought my MP’s understanding on the progress of the Green Paper proposing changes to disability support inc PIP

@Erica interesting sucess for Blood Cancer sufferers suffering mobility restrictions.

Again well done @Ubbums12

Iain

[Ubbums12]

Well done for contacting your MP, Iain. I look forward to hearing what his response is.
And I wish you success in getting your Blue Badge soon.
All the best Edwina

[Iain]

Hi @Ubbums12 and all,
Here’s a recent document from Big Issue. Hope you guys can open the link.

Labour government urged to drop 'dangerous' disability benefit reforms

I’ve still not heard from my MP, but in fairness she was a busy lady in the former government. I’ll keep you all informed of her response.

Iain

[Ubbums12]

Have you received your blue badge yet, Iain? I’ve been absent for a while as have been very ill for the last 5 weeks (infection gone crazy then extreme muscle weakness leading to several falls). Am on the mend now but still finding it it hard to walk due to the peripheral neuropathy. Hoping you are well and hoping you’ve had good news re your blue badge.

[Erica]

Oh @Ubbums12 it sounds as if you have had a really rough time, be very kind to and look after yourself

[Ubbums12]

Thank you for your kind words, Erica, they mean a lot x

[Ubbums12]

@Iain i hope you are ok, I’ve not seen you posting for a while. Let us all know that you’re doing ok.

[Ubbums12]

@Iain @Erica
I’m still very concerned that there are no recent postings from Iain. Does anyone know how he is?
I hope you’re ok @Iain and look forward to see your writings very soon.
Edwina