Hello all. I was first diagnosed with Sensory Motor Axonal Neuropathy in March this year. I thought that was it until I recently got the diagnosis of IgM Monoclonal gammopathy of unknown significance (MGUS) which the Consultant believes is the cause of my Neuropathy. I am now waiting for my first appointment with the Haematology Clinic on 3rd September which seems an awful long time to wait. In the meantime I’ve tried to get an appointment with my GP but have to wait two and half weeks for a telephone appointment. I have been experiencing pains in my left hip and back and need some pain medication but seems I just have to wait. It doesn’t help this feeling of helplessness - no one to discuss it with or explain what will happen, so finding this forum has been a great help. My IgM was measured at 7.5 and Kappa 49 and Lambda 41. Can anyone tell me what happens at the first haematology visit or give me any other insights please. Also, I wondered if anyone had got a Blue Badge with Monoclonal gammopathy of unknown significance (MGUS) with Neuropathy. Sometimes it is difficult to walk far, especially when my balance is affected. Looking forward to hearing from you all.
Hi @Ubbums12 a great big welcome, you are now part of our forum family.
I will give you the link to the Blood Cancer UK just diagnosed page
I’ve just been told I have blood cancer | Blood Cancer UK
and Monoclonal gammopathy of unknown significance (MGUS)
MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
and applying for financial help
Louise S’s story | Blood Cancer UK
You have had 2 enormous shocks so please be ever so kind to yourself, I was in shock for quite a while.
I have to say since my diagnosis there is a lot of waiting around and not knowing and it is really horrible.
.With your GP do you have the opportunity of ringing up or filling in an on line request early in morning for an appointment on the day?
If so perhaps try that way and stress your symptoms and the pain you are in and how you are feeling.
I have also rung hospital departments to ask if I could have a cancellation appointment in the past, it is worth a try.
The Blood Cancer UK support line is also there for you on 0808 2080 888
I hope others will be able to share their experiences with you.
Really look after yourself, you have a lot going on and please do keep posting.
Hello Erica, thanks for your encouraging response. I do appreciate it. I’m trying to read all relevant literature. Unfortunately, when I made the appointment with my GP I said I was in pain but all they would give me is a telephone appointment two + weeks on. They are notoriously bad. I will continue to seek help and knowledge through this forum. Thankyou
Hi @Ubbums12 If you wish to take matters further it would be to the Practice Manager.
Then from the Consumer magazine Which there is the following
How to complain if you’re unhappy with your GP or doctor’s surgery - Which?
I believe in being pleasantly assertive
Thank you for your advice but will just wait until the telephone appointment happens.
Thankyou
Hi @Ubbums12
Re Blue Badge applications. A very relevant topic for many of us be that from the morbidity and/or the therapy.
As someone with comorbidities including Non-Hodgkin lymphoma (NHL) (Waldenström macroglobulinaemia (WM)) all of which have fatigue and neuromuscular symptoms I am currently in the process of applying to my Local Authority for a Blue Badge.
My experiences/understanding are as follows:-
1 - Cancer is a disability under the Equality Act etc but Blue Badge is judged against mobility not disability. A clinically subjective and arguable element to the whole process;
2 - As a relevant aside Monoclonal gammopathy of unknown significance (MGUS) is not recognised as a Cancer. Tell that to the diagnosed, mobility or not!;
3 - Those who receive PIP mobility allowance or equivalent already have amassed enough ‘points’ to qualify;
4 - Blood Cancers have ‘hidden’ mobility issues (fatigue, neuropathy, muscoskeletal, aneamia etc etc) and there lays the ‘convincing them’ element in an application;
5 - One morbidity also to consider defending is ‘too many birthdays’. Blood Cancers, as we all know can hit at any age but a majority are post retirement. As such “aren’t all wrinklies open to limited mobility issues?” Defend!;
6 - Be truthful but push definitions to the limit. As an example " I’m suffering from an incurable medical condition that will, by default, exist and influence my daily mobility abilities for my extended future".
7 - The mire of “how many metres walked and for how often?” is a total irrelevance, e.g. when you’re in pain, a fall risk or the resultant fatigue of walking to your destination, e.g. medical consultation is prohibitive.
I’m aware of advice being given by Citizens Advice, Macmillan etc on procedures of application but the ‘defencible evidence content’ is individual to all of us.
I’ve been morally supported to apply by my CNS team but my direct evidence is through hard copy records relating to my falls history, my cardiovascular need to limit physical exertions due the treatments and the musculoskeletal/neuropathy reactions of the targetted drug therapy.
Maybe @Erica and the team can add to or correct my ramblings on this sometimes emotive but important subject.
I’ll endeavour to keep you all updated on my progress in convincing an administrator with a tick-sheet that my mobility is limited and my safe wellbeing is affected.
Keep strong!!!
No idea @Iain I will copy your post to Blood Cancer UK for you @BloodCancerUK-SupportTeam
Thankyou Iain, it was so encouraging to read your very detailed response. As it happens I submitted my blue badge application online yesterday. If only I’d seen your response before I submitted it. As you say, blood cancer is so complex and very difficult to convey the many problems it brings when the layman assessing the application is following a tick the box exercise. I doubt if my application will be successful because I was truthful in my responses about how far I can walk and found it difficult to convey on the form just how difficult it can be to walk a few steps without losing my balance sometimes. Anyway, I’ll just wait and see. But I so wish I’d used some of your powerful words on my application. Thanks again and all the best to you Iain.
Edwina
Thanks for your kind comments and support.
If I may further expand on my experiences they extend beyond my own morbidities but those of my former partner who suffered with with M.E. (Yuppie Flu).
She didn’t want to a) play the sick card, and b) was too ‘honest’ in her estimations of ability thus playing into their inflexible descriptors.
Her conditions had caused her employer, ironically a Local Government, to retire her but that same authority declined her Blue Badge application.
Next step was to seek Living Allowance. That too was also too honestly completed, and that against the advice of the local Citizens Advice Centre. It was rejected.
As a Local Government officer, used to adminastrive bulls*** and legalise, used as by authority as a defence I supported her in an appeal. The case was won on a matter of procedure but not on medical evidence including that from her G.P. Her Blue Badge was obtained by her Living Allowance/PIP.
I appreciate that overturn was against the then Minister DWP where as our Blue Badge applications are in the hands of the quasi-judical approach of different Local Authorities, but the experiences have been so similar.
As a relevant aside the DWP disability appeal tribunal was held on the 3rd floor of a building with no lift!
So remember appeals are within the process - a stressful chore but the initial application isn’t necessarily the end all and be all.
And if you can get a hold of the same descriptors, as used by the assessors, try and manipulate those to your favour in your responses.
Hope all goes well,
Iain
Thanks again. Unbelievable! The irony of a disability office being on the third floor without a lift. You couldn’t make this up!
As said before, I do wish I hadn’t made made my application before reading your reply so that I could have been more astute with my responses. However, you have given me the confidence to prepare myself of the rejection and following appeal. I’ll make sure I do a lot of research into their preferred descriptors.
So sorry to hear your partner had to endure all this nonsense, but lucky she had you fighting her corner. I’ll make sure I keep you informed of progress.
All the best
Edwina
@Ubbums12 ,
Thanks, and as said before be strong and self advocate.
Reliably
It’s vital that, before you complete the PIP test, you understand that just because you can carry out an activity, that doesn’t mean you are prevented from scoring points for being unable to do it.
You need to be able to complete an activity ‘reliably’ in order for it to apply. According to the guidance, ‘reliably’ means whether you can do so:
- Safely
- To an acceptable standard
- Repeatedly
- In a reasonable time period, no more than twice as long as a person without a physical or mental health condition would take to carry out the activity.
So, for example, if you can ‘wash and bathe unaided’ you will not score any points for that activity. But if it takes you hours to do so or it would be dangerous to leave you alone to bathe – for example, because you might have a seizure - then you may score points.
Or if you could walk 20 metres once, but afterwards you would be so exhausted that you could not do so again for hours or you would be unable to carry out other everyday activities after walking 20 metres, then you may count as not being able to do so.
As an example for myself
I rarely shower without one of my kids being at home and upstairs as my medication can make me light headed and dizzy and I’m afraid of falling in the shower. I also have steps by my bath (OT advised) so I can step into my bath on the same level as the inside of the bath and I have a towel rail that can be pulled out from the wall with my towels on so I don’t have to bend down
@2DB they are very valid points you make but it is I fear not as straightforward for mobility and subsequent Blue Badge application as would seem.
PIP is for 16 years to Pension age. If you are already are on PIP pre- minimum Pension age it can continue but if not on PIP pre retirement that points system is not available to a post retirement application.
PIP is a financial benefit to supplement living needs costs for the employee population with disabilities/living limitations.
As I referred to in my previous ramblings, convincing the administration that your mobility restrictions are no more than natural ageing is not always easy. If it were then every aching wrinklie in the Country could apply.
Yes I’ve witnessed sucessful mobile disability claims and subsequent Blue Badge applications but they were already categorised as ‘unfit to work’ before their retirement age.
Whilst I, like many can apply for potential state benefits (£’s) as a 72 year old, I’m not; I’m seeking to obtain a Blue Badge to improve my safety risk factor from falls, feints and fatigue due to my Waldenström macroglobulinaemia (WM) and its treatment.
For me it’s a case of modelling my Blue Badge application on the PIP sect.14 questions and mimic the PIP pt.2 for additional information re my unseen conditions.
Again wishing you all well,
Iain
@Iain
Is this any help to you
You say you have Waldenström macroglobulinaemia (WM) so why are you talking about old age mobility I’m a bit confused 
Surely your Waldenström macroglobulinaemia (WM) is affecting your mobility and you would use that to apply for your blue badge ?
I also don’t get why you wouldn’t claim for any benefits that you’re entitled to if it helps with your disability.
Hi @2DB,
As said to me by Macmillan this morning at Leicester Royal Infirmary Haemotology, when I was giving my quarterly bloods, the age gap (post retirement) is a noted scenario.
Their advice in my case is to persist with Blue Badge as a ‘hidden disability’ but make it hard copy, not online, and seek if they can offer an interview. My very point as a face to face is not so easy for an assessor to hide behind a computer screen.
Provide all relevant evidence requested and other relevant information. They were aware that the Digital IT applications algorithms are even more subject to a faceless, inflexible, box ticking exercise.
As I previously stated dealing with a Local Authority (LA) (Blue Badge) is a different administrative process to that of the DWP.
As as retired senior local government officer I’m very experienced in the the tangle of Social Services/ state benefits and local rates relief.
If I were to get a low level mobility designation and any benefits, which is most unlikely, and I inform the LA and State Pensions of a change of circumstances there is an opportunity for a decrease in existing benefits/discounts.
Certainly if I am driven to the Elderly Welfare Benefit route my savings, State and LA pensions would be calculated in to any considerations.
Having had Chemo and Radiotherapy (Hodgkins) 40 years ago I’m pretty savi on the system when of working age. Its this age thing, the situation is a bit like being a 17 years old; no longer a child but not an adult. A bureaucrat limbo land.
I can only refer to me, we are all different in morbidities, therapies and ages hence different approaches for different personal circumstances. I would score 0pts for care. It’s solely normality in mobility as an independentlu living citizen.
I’m seeking an aid to benefit my safety, wellbeing and QoL not financial benefit. I"ll keep that for the LA to sought out when I’m in end of life care.
You keep yourself safe. Regards
Iain
Hello again Iain, your writings are really very thought provoking. I have learned so much from your advice. If only I hadn’t made my online application before reading your wise words. I today received an email telling me my application is now with the assessor. Of course, I expect to be rejected but at least now I am prepared and fully armed to appeal with more intelligent reasons. Like you, I am only seeking to get a blue badge to make life a little easier. I’m not trying to get any financial benefits. I am 66 years old and a pensioner. If I understand you correctly, Iain, am I right in thinking you have already had your blue badge application denied? If so, I am surprised given your diagnosis and what you have been through. Please enlighten me.
Meanwhile, take care
All the best, Edwina
Thanks, Firstly I am in the process of applying so no decision as to date.
My experiences of rejections relate to my former partners’ experience.
I’ll return with my ‘result’ as soon as I have it.
Re my morbidity of of Waldenström macroglobulinaemia (WM) and @2DB question on me applying now I shall expand. 5 months prior to my ultimate diagnosis, being previously diagnosed as MM I fell (aneamic low blood pressure) so any mobility issues would have been directly to a broken hip/femur and not Blood Cancer as I was Monoclonal gammopathy of unknown significance (MGUS).
On recovery my progress was a)subjective, and b) pre - therapy.
I’m now in treatment and showing the Neuropothic Muscoskeletal Aneamic Myalagic me. I can now provide that hard copy evidence anf the names of all those 'ologists that now monitor and formally report/record…
The more I did my research the more I added to my pre-retirement knowledge.
Whilst for myself PIP is not relevant by age, for those can apply be aware of the former government (Cons) green paper on the removal of PIP and its as many consider a further less disability friendly system. Keep alert to what the new Labour Government do with this.
In fact it might be a relevant, standalone topic (Disability support and benefits in Blood Cancer) for @Erica and her boffins in the background to keep us up to date.
Hope all goes well with your application and an appeal/ reapplication is not required 
Iain
Hi @Iain, @Ubbums12 @2DB I have started a thread with the title Blood Cancer - Support and Benefits which is slightly broader than perhaps you suggested.
It is actually a subject I know nothing about and I have always referred people to Citizens Advice and Macmillan Cancer.
I have added the relevant information from the Blood Cancer UK website for you.
Good idea of yours @Iain
Thanks again, Iain. I will make sure to let you know how my application progresses and wish you well. Sounds like you have really been through the wars with your illness. Stay safe and thanks again, Edwina.