PAD and benefits

[liziJ]

Not sure whether this should go in the Off Topic section, so feel free to move it dear moderators!!

So I've just almost lost the will to live after almost an hour on the phone to Job Centre Plus going through my application for Employment and Support Allowance, and it got me thinking about things we (ie we UKPIPS) probably need to try to do at some point.

The conversation went a bit like this:

JCP: Are you unable to work due to illness?
Me: Yes.
JCP: Do you get specialist medical treatment?
Me: Yes [so far so good!]
JCP: By this we mean dialysis, chemotherapy, radiotherapy or plasmapheresis.
Me: Well it's none of those, but it is specialist medical treatment. I receive it weekly, and without it I'd probably die.
JCP: [Suspiciously] Hmmmm. What's it called?
Me: It's antibody replacement therapy.
JCP: That's not on my list.
Me: Well no, it probably wouldn't be as my condition is very rare. But I need to infuse human antibodies once a week to keep me alive.
JCP: What's the name of your condition?
Me: Primary Immune Deficiency.
JCP: Is that the same as HIV?
Me: No. HIV is a secondary immune deficiency, which means you catch it. My condition is a Primary Immune Deficiency which means it's a genetic disorder.
JCP: Oh. Well what's the condition actually called?
Me: Primary. Immune. Deficiency.
JCP: Hold on ... [5 minutes of keyboard-tapping sounds ensue] ... It's not on my list.
Me: No, I didn't think it would be.
JCP: Hold on ... [More keyboard tapping] ... I'm just going to go and speak to someone.
[5 minutes of listening to "I Will Always Love You" on pan pipes]
JCP: Hello. It's not on my list.
Me: No, it's a very rare condition.
JCP: What shall I list it as? Is it a blood disorder?
Me: Not really.
JCP: I'll put blood disorder. Do you have any other condition?
Me: Yes. It's called bronchiestasis. Would you like me to spell that for you?
JCP: Yes please [keyboard tapping sounds] ... it's not on my list.
Me: Oh really, I thought it might have been? It's not quite as rare as the first one.
JCP: Can you spell it again please.
Me: [Spelling s-l-o-w-l-y]
JCP: Yes! I've found it! Can you tell me when you first had these conditions?
Me: I've probably had the Primary Immune Deficiency all my life but it wasn't diagnosed until 1999. I've probably had bronchiectasis since I was a teenager but it wasn't diagnosed until 1998.
JCP: So when shall I say you first had these conditions?
Me: [banging head on table] You can put 1999 and 1998 if you want to.
JCP: What date?
Me: I have no idea.
JCP: I need to type in a date.
Me: First of September.
JCP: For both of them?
Me: Sure, why not.
JCP: Any other conditions?
Me: Yes, depression.
JCP: [jubilantly] Depression! I know that's on my list!
Me: Hooray!

And so it went on. If I wasn't desperate for money and worried about putting food on my children's table I would, in all seriousness, have given up.

Sooooooooo ... I wonder how on earth we would start the process of getting PID/PAD onto relevant lists of conditions, and getting antibody replacement therapy recognised as a "specialist medical treatment"?? Any thoughts??

Lizi x

[bamber]

Sounds dreadful and yet I can understand the robot like conversation. So much is on computers now. With yes and no answers - I am on the old Incapacity benefit - but will be moved off it soon onto ESA - not looking forward it.

[slf]

Hi Lizi
No surprises there,the doctors the SS have on call have'nt heard of CVID let alone make any attempt to understand it. I was fortunate after endless appeals and a tribunal,someone realised I should get Pension Credit,but a very unhappy experience.
One more thing,the person you spoke to wont have any more to do with your claim,so that all means further conversations like that
Good Luck with this,it is so very unfair
Steve

[alittlebean]

Oh dear Liz, that sounds incredibly frustrating! Think I'd have screamed. Totally agree it needs to be flagged up with ss in some way. Hope things are improving for you xxx

[mali42]

Hi Liz

I had a similar conversation when I was getting travel insurance,
never heard of that, hang on I will ask our doctors, nope they havent heard of it either,

The nearest they could get was igg Deficiency but I made them put cvid on there as well because I don't trust them.

I hope you get it sorted soon without all the stress.

Malcolm

[liz2mac]

Hi Lizi,
No, no surprises. This is high on the list of "jobs to do" for UKPIPS and I will be on to it as soon as I can. Did you use the British Lung Foundation helpline Lizi?
Liz

[willo]

Hi Lizig

try telling them you have Pan-Hypogammaglobulineamia that seemed to work for me.

[liz2mac]

Another thought, they do understand the term "chronic fatigue"It may be worth trying that as most of us have that little bundle of joy as a mere part of our PAD!
Liz

[liziJ]

Bill, I think the guy I was speaking to would have fallen off his chair if I'd tried to spell that for him! Liz, the chronic fatigue idea is a good one. I'm going to be asked to attend a medical which is a bit daunting, so I could keep that up my sleeve. Maybe I can speak to you in advance of it to pick your brain on getting through it!

I did speak to the BLF benefits advisors. They were very warm and tried to be helpful, but they (or at least the person I spoke to) didn't really seem to have the level of expertise I needed. They gave me a brief overview of some benefits I might be entitled to, but advised me to go to the CAB for more advice.

Lizi x

[gilliem]

Lizi, there was a time when I had to go through all this nonsense with Tommy. He had a broken back [strapped in a corset] a broken neck [in a stiff collar] and what was then called the Dept of Health and Social Security wanted him to sign a form saying that he was fit for work! It was a very unhappy introduction to life outside the RAF. What we did was to have EVERYTHING printed, with dates of injuries, treatment, consultants' names etc. We handed stapled-together copies to anyone who queried his state of health at medicals and at the tribunal where we ended up. It did my heart good to hear the chairman of the tribunal tear into both the DHSS representative and the Forces representative and throw the case out having complimented Tommy on his presentation. I hope your case won't have to go that far, but prepared documents still grab officials' attention and are a great memory prompt when you're feeling flustered and wrong-footed.
Good luck.
Gillie.

[liziJ]

Gillie that's absolutely shocking. What a truly appalling way for Tommy to have been treated. I'm going to try to follow your advice of having as much written documentation as possible - makes a lot of sense. Otherwise I'm right back to 15 years ago, trying to persuade clueless doctors that I'm not a hypochondriac. Oh G-d, I'm not sure I've got the strength for this!!!!

L xx

[liz2mac]

Hi Lizi,
I'm up for helping in any way you feel appropriate. I will also ask the UKPIPS med pan to write somthing for all of us who have to go through this to take with them to the medicals. far easier to hand over a document about our condition than to have to explain it to the one who is supposed to be asessing us! I'm sorry the BLF adviser wasn't more help, but I'm very grateful for the feedback. UKPIPS is actively working to get funding for our own benefits adviser. However, it will be months before we can even think of having anything in place. If and of you'd wondered why I've been quiet on the forum its partly because I've got so much background work to do for UKPIPS at the moment!
Liz

[liziJ]

AAAAAAARGHHHH!!! I had a letter from Job Centre Plus asking me to check over the information I'd given on the phone. Not only is it FULL of mistakes where the guy I spoke to has clearly asked me a question and then typed a totally different answer (eg wrong date that I moved into my house, wrong date that my DLA started, wrong spelling of GP's name etc) ... but I was also shocked to read: "Specialist Treatment - None". After all the effort I went to trying to explain it. So as I say ... AAAAAAARRRRGGGHHHHH!!

[gilliem]

Oh Lizi, how this treatment brings back bad memories. I thought that this kind of thing didn't happen any more. You'd think that people dealing with this kind of thing on the 'phone would be better trained, wouldn't you? I really hope you get someone who can at least spell next time, and maybe someone who doesn't have 'selective' hearing?
Best wishes,
Gillie.

[willo]

I must say that the process for ESA and DLA went very smoothly and was dealt with very quickly, I thought I would be in for a fight but not even a query from either departments. The DLA was dealt with in less than two weeks, the advisor's letter said that we had provided enough information that they did not have to contact the GP nor the consultant.

Like Gillie I provided written evidence i.e. consultant reports and GPs letter. When invited to an ESA assessment I told them that they would have to arrange a home visit due to the higher risk of infection. I am up for review this coming October.

I also used the PIA DLA guide and help from a health authority/trust person employed specifically to advise on benefit entitlement and crucially how to read and complete the forms.

However, the most important helper was my wife as I would not have even attempted to make the claim without her support.

On the forms you must read all parts of the question not just the first part which most people tick and assume that the other parts do not apply. You will probably fill in the form on one of your better days, REMEMBER it is your bad days that you need to tell them about. It is not just physical problems but PSYCHOLOGICAL issues as well.

An example question is whether you can cook a meal, I may be able to cook a meal but, I would usually be too tired to eat it. It is also important to highlight how all of your conditions impact your quality of life.

A psychological effect of PID on me is that I avoid going to places where the general public are likely to be, so public transport, cinemas, etc.

I had just completed training as a driving instructor when this condition hit me, mainly fatigue and very slow reactions, so I was unable to continue working. It was the Jobseeker personal advisor that told me to transfer to sick benefit and apply for DLA.

[liziJ]

Bill that's really useful advice. I'll definitely follow your suggestion of asking for a home visit - thanks.

Lizi x

[liziJ]

PS if anyone else has any advice or suggestions I'd be really grateful to hear them. Anything that helps me deal with this crazy system!!

L x

[willo]

Concerning the ESA home visit, you will be asked for a letter or fax from your GP.

[dianesistern]

Hi i know exactly what you are going through and your telephone conversation was a mirror image of mine, its the constant having to explain it all to each person each step ot the way that does it. I have also applied for DLA and been tuned down everytime even with the help of a social worker, but i think both DLA and incapacity benefit are being scrapped soon so it will all begin again i currently have to go annually to the job centre for an interview to see if i am elegible for incapacity benefit . Diane

[liz2mac]

I am in the process of being put in touch witth someone at the Dept for Work and Pensions to discuss all of this. Lizi G has already agreed to use her case as an example, anyone else who wants to help in this or any other way, just let me know. You can email me at 'A PID Organisations Email' or leave me a personal message on the forum
Liz