New to this illness lark - please can you help?

jennyjelly

Hi all, I'm wondering if anyone can advise me on how to proceed. Long, long post – apologies in advance, but wanted to give you the whole story.

My son is 20, lives at home, and has a little boy who lives with his mum (they are no longer together). He left college at 17, signed on for a couple of weeks then started a job he loves. He is still working there.

At the same time as starting work he started getting severe pain in his joints and was diagnosed with reactive arthritis, which seemed to have been set off by tonsilitis. His tonsils were taken out but the arthritis remained. Over the past few months it has spread into his spine and he is waiting for another MRI scan (this was requested by the consultant on Monday, along with further xrays).

He has regular steroid injections into his hips and elbows but the benefit of these only lasts for a few weeks and the hospital is reluctant to increase the frequency. He also takes methotrexate, though whether this is working or not I don’t know, it may be worse without it.

Although he is on medication it seems that his pain is not being dealt with properly. He has been referred to the pain team at the hospital but they won't give him any stronger pain relief to keep him going until that starts, and the tramadol/paracetemol/ibuprofen/codeine cocktail he is using is barely taking the edge off it.

Over the past 3 years the severity of the arthritis has increased to the point where he is in dreadful pain every day, to the point where he is screaming and punching the wall. He gets up early to take pain relief so he can go to work on time and rarely takes time off, but is frequently unable to do the more physical parts of his job. He was always on a 12 hours contract but "coincidentally" the hours he is being given each week have now reduced from around 30 to the basic 12 and he is worrying that they are looking for a way to get rid of him.

He used to be very active and sporty but is now on crutches. He used to cyle everywhere but now has to rely on lifts and taxis, and it is costing a fortune in taxi fares just to get to work when his dad and I are unavailable (we both work).

In general, his health and the prospect of another 60 years in this kind of pain is making him very depressed and he is on anti-depressants. I’m also on (different) anti-depressants as watching him in pain and seeing his life effectively going down the toilet is the worst think I can imagine.

So I’m hoping that some of the more knowledgeable people on here might be able to suggest our next move. Specifically:

1. How do we get him effective pain relief?
2. What can we do to force better treatment?
3. What employment rights does he have?
4. Should he be registered as disabled? If so, how do we go about this?
5. Would he be eligible for a blue badge?

There are so many other questions I have but this post is already long enough, for which I apologise to anyone who has enough stamina to still be reading!

lisyloo

Sorry to hear about this. This is terrible for anyone but particuarly for someone so young. He is clearly a "striver" and doing everything he can.

Sorry I can't help on the health or employment rights side. Hopefully someone more knowlegeable will come along.

Should he be registered as disabled? If so, how do we go about this?

Would he be eligible for a blue badge?

He can do this on-line here:
https://www.gov.uk/apply-blue-badge

The council will decide and he may have to have an assesment.
If he has "very considerable difficulty" in walking he should be able to get one, but I'm not sure how far that is in m or feet or how they measure pain.
If it's going to help then I'd do it. - there isn't much to lose.

jennyjelly

Thank you lisylou. I've just done the eligibility check for a blue badge and it looks as if he would be able to have one, which would make such a difference as he needs to be able to park near to the hospital amongst other places.

krisskross

I had to be really firm with my husband's Consultant to get the gold standard treatment for his rheumatoid arthritis. Phone the Consultant's secretary to get an urgent appointment to discuss. We paid to see his consultant privately (about £200). It is apparently very expensive. There were a few hoops to jump through but the results have been excellent. He was also changed to injected methotrexate to ensure he benefitted from the full dose.

He hasn't needed a steroid injection or infusion since starting the anti TNF

Do get your son to apply for DLA. And get advice to complete the form.

jennyjelly

Thank you krisskross, good to hear from someone who has been there with the same problem. Might pick your brains as we go along if you have no objection!

Poppie68

Im on a whole cocktail for my arthritis including a patch, maybe worth speaking to his GP about.
Just a bit of advice when completing DLA forms, focus on his care and mobility needs/problems and not the condition itself. It is awarded on how it effects his daily life and any help he needs.
Make sure you include all letters from specialists etc and a copy of his repeat medication list. They do usually contact the GP so maybe worth letting the GP know and asking them to contact you so you can go through the form together, as your GP may not be fully aware of the extent of his daily problems and needs.

rogerblack

Addressing only some parts.

jennyjelly wrote: »

What employment rights does he have?
4. Should he be registered as disabled? If so, how do we go about this?
5. Would he be eligible for a blue badge?

'registering disabled' means almost nothing these days.

The important thing that might trigger at least funding to a degree would be disability living allowance.
It is important to make a claim for this soon, as this will be changing to PIP, which has different criteria.
https://www.gov.uk/dla-disability-living-allowance-benefit/what-youll-get

On the facts you present - if his condition has been similar for 3 months, and he requires crutches to get around, and is in severe pain when walking, it is likely that he would meet the criteria for 'high rate mobility' - at around 50/week.
It would need
His employer must make 'reasonable adjustments' to his working conditions - for example a reasonable adjustment might be a more suitable chair, workstation, or a minor modification in working procedure.

It would not include things that so change the job as to make it not the same job.
(though that may be one way they can comply).
He can be dismissed if he cannot do the job.

Access to work may also be useful.
https://www.gov.uk/access-to-work


An award of DLA can also trigger a blue badge.

It sounds at least arguable that he would be eligible for the support group of ESA.
This would be if he decides to give up work.

krisskross

jennyjelly wrote: »

Thank you krisskross, good to hear from someone who has been there with the same problem. Might pick your brains as we go along if you have no objection!

I'll help anyway I can.

LL30

Hiya,

I'm a young(ish) arthritis sufferer too (31). Mine developed after a nasty reaction to insect bites last year and I'm currently injecting methotrexate in a bid to get it under control. I can completely understand your struggle with seeing your son suffer, my poor Mum finds it so hard to see me as I am now - it's such a shock to the system of not only the sufferer, but their loved ones too.

In terms of his employment, he's covered under the Equality Act 2010. Has he informed them and given them all the relevant info? He needs to do this so they can make reasonable adjustments.

I have a blue badge. It's amazing, so I do hope he manages applies. I also receive low rate care - DLA. I wish I had pushed harder for the mobility component, but I didn't have the energy to do so. The forms are complex, so do get help with filling them in.

In terms of how he's coping with the pain, what's his relationship like with his rheumy? Mine is excellent, I am very lucky and I'm currently considering CBT but time is an issue for me (doing my MA and I'm a single Mum to a 2 year old), I know I must prioritise though! I'm also starting counselling so I can get my head around my new found status...I told the counsellor that I was looking for acceptance, she asked me what acceptance was! Argh! We'll see!

I had to give up work in April last year. I already knew I was going to Uni from September anyway, but I found it all too much and the aim was to try and get in remission with lots of TLC before I started. Unfortunately, remission eludes me at present, but I'm holding out hope that I'll get there eventually!

Anyway, rambling away, this forum is great for picking up tips (I hold my hands up to enquiring about people's bin habits ) xx

GlasweJen

OP get your son onto access to work https://www.gov.uk/access-to-work/overview

They will come out to his work and assess his environment and suggest changes that can be made to help. Depending on the size of the company they then decide who should pay for work.

Regardless of the company size they may be able to provide him with help getting to work. If a GP will certify that he can't walk, drive (for medical reasons excluding addiction is the rules in Scotland but I understand they may be more relaxed elsewhere in the UK), or use public transport they will pay for taxis to work and your son would contribute a set amount (usually the cost of using public transport).

mazza111

To reiterate, please claim DLA. It can make the world of difference and may even allow him to be able to afford to cut down his hours and get a blue badge.

My 22 year old daughter has had it since last April, and has just her new award through until April 2014. The blue badge makes all the difference, she is an HMS sufferer, and had a rapid deterioration after breaking her leg, she now has more dislocated bits than bits that are normal.

The advise you get on these forums with regards to DLA is second to none, Poppy is spot on when she says that you should concentrate on his care/mobility needs. If you feel he's not quite ready for DLA you can apply to the social work for a blue badge independently of DLA but would need to go through an assessment.

As for medication, it can be hit and miss, something that works for one, doesn't always work for another. He may need them juggled a bit to get the right combination for him.

Can't help on the job front as my employer couldn't really make reasonable adjustments, I was a postie who was unable to walk/cycle 8 miles every day, there was no indoor work available.