Help! Case studies urgently needed for three differen... - NRAS

NRAS

37,265 members46,133 posts

Help! Case studies urgently needed for three different research projects!

EmmaS-NRAS profile image
EmmaS-NRASNRAS
8 Replies

Hello everyone,

We currently have three different requests for patient case studies. If you qualify for any of the following then please do get in touch with us. We are happy for people to remain anonymous but ideally we would also like stories from people who might be willing to speak to the press about their story. Anyone interested in any work involving journalists/TV would be fully briefed and supported by NRAS.

•Comorbidities –we are working on a joint briefing paper with Roche Products Ltd and currently looking for stories about difficulties people are encountering with comorbidities they have developed as a result of their RA. We are particularly interested in cardiovascular, lung problems, clinical depression and eye health. We are looking to compile some case study material on around this issue by 20th June at the latest.

•A BBC researcher is carrying out some background research for a possible TV documentary on the Work Capability Assessment and the Employment and Support Allowance. They are looking for case studies and to speak to claimants who may have applied for the benefit and encountered difficulties. We need to respond to her by 20th of June at the latest and would be really grateful for your help.

•Social care – NRAS is a member of the Care and Support Alliance (a group of 50+ charities who are promoting the urgent reform of the social care system) we are looking for anyone that is having problems with social care services like the provision of carers, or where social care has enabled someone to make a swift return to work or to stay in work. Ideally we would like to gather the case study material by 13th of July at the latest.

If you have a story you would like to share, please get in contact with our Government Affairs Manager Jamie Hewitt urgently on jamie@nras.org.uk

Many thanks in advance for your help.

Emma Seymour

Membership Supervisor

Written by
EmmaS-NRAS profile image
EmmaS-NRAS
NRAS
To view profiles and participate in discussions please or .
8 Replies
allanah profile image
allanah

Hi Emma

I have sent an email to Jamie if I can be of help

Axx

asasmum profile image
asasmum

Hi Emma

I would love to tell my story but feel that sadly now is not the right time as I have just been dismissed through absence, and not given ill health retirement, due to Occupational Health's decision, despite all health professionals advising that I am unable to work. I have been legally advised to make a complaint which i have just produced. Sadly my employers have no recognition of disability and only crossed the t's and dotted the I's, and paid lip service to me. We hear this often on this site and its appalling. I really do feel cheated and let down by my employers and those who should have supported me, and at a time when I needed them the most. Ironically my health has gone from bad to worse despite trying several biologic drugs and I now wait for infusions. At a time like this when your health is suffering so badly its disgraceful that we are treated without a by or leave after giving so much of ourselves to our professions. I am angry and hurt by the way I have been treated especially when the only visit in 9 months was after 6.30pm unexpected from a manager who new me for 2 days, and turned up with a "book" of papers on capability and ill health investigation. Fortunately I was trying to recover in bed from terrible side effects of the toxic drugs and hubby dealt with her. I have been told that the team want to organise a leaving do for me!Well I dont mean to be ungrateful but when I have had no visits and 1 get well card in all this time I really do feel that this takes the biscuit! I am not rude or ungrateful but I really am trying hard to find a decent way of telling them no thanks, you must be joking!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So yes I would love to take part in any study but feel that maybe I would not do the cause justice at the moment. Apologies for the negativity but as you can see I am not in a good place just now.

watson3 profile image
watson3 in reply toasasmum

Sorry. To read how badly you have been treated. It is a sad state of affairs. It would appear that this is happening regularly within the employment sectors. I to am being harassed to go back to work, despite being unfit to do my present job, I am a staff nurse. It is the NHS I work for, so you would at least expect an element of understanding or am I being ridiculous to think this. Can you not take the company for constructive dismissal on grounds of unfair treatment of someone with a disability. It is stressful enough to have a conditions that can render you completely disabled, affect you self esteem and render you totally dependant on others.and, you can be blatantly discriminated against. This I find totally abhorrent. Good luck and I am with you every step of the way should you need an far to sound off too. I too may not be far from a similar situation. Regards Carole.

asasmum profile image
asasmum in reply towatson3

Many thanks Carole.

It means alot that someone is listening. I really hope that you do not have to go down the same path as me. I have dealt with some difficult times throughout my life but none compares to this. Ill health,bereavement, divorce etc but when the only support should come from the state with its supposed protective systems, in reality sadly there is no support, justice or redress, it blows the mind, especially like you, when we work in the caring professions( social worker). I can honestly say not once have I looked down on anyone, only to pick them up. My conduct has been exemplory, yet within the team there were workers who blantently absconded on so called home visits and took sick leave to have a jolly etc. The only consolation is I do not have to return to see any of them.Its just a shame that I was treated this way and that I couldnt leave under the circumstances that is correct and justified. I feel that I need to write a book about this in future just to get it out of my system !!!!!! Once I have followed through with my appeal and won, (which I intend to follow through to the highest court in the land if I have to, and providing my health holds out), I then hope to put this horrendous period of time working for this local authority behind me. I then hope to remember the children, families, true colleagues and professionals that I have worked with, and in over 6 authorities and think back on all of the positive experiences and outcomes for these families, which there have been many.

Anything I can help you with just let me know? A union rep and /or solicitor is an asset. It just doesnt help when your union rep x 2 both go on sick leave one after the other and then you meet your 3rd rep the day before the hearing. I had to rely on him even though he knew nothing of the case and my GP advised me not to attend. Well I am still hopeful justice will prefail.

The positive thing is that there is lots of sound advice on here from others that have experienced just as much discrimination if not more.

Take care and BFN

Asa's mum xx

Hi Emma,

I maybe able to help out on the social care one. I receive direct payments. And it has been a lifesaver and allowed me to continue to work a few hours a week when I'm not flaring to badly.

However even though direct payments has been a lifesaver it only covers the absolute basic needs in the time they allow your pa. So while its been a great help I still find myself having to get help and care from other sources, and from my own pocket not good on a low income.

Feel free to message me if I can help at all.

Julie x

Tillytop profile image
Tillytop

Hello Emma

I may be able to help on the co-morbidities one and will send you an email.

Tilly

rokia profile image
rokia

Hi Emma would like to find out more please can you get in touch with me

allanah profile image
allanah

Hi Emma. I emailed Jamie, I hope you got it, Thanks Allanah

Not what you're looking for?

You may also like...

Urgent help required! Is your DAS score <5.1 and your RA not well controlled?

Dear all, We are currently writing a consultation response for NICE on access to rheumatoid...
EmmaS-NRAS profile image
NRAS

Your help please - RoACTEMRA (tocilizumab) case studies required!

I'm on the hunt for case study subjects for some media outreach around the end of this month...

NRAS Social Media Survey - we need your help!

Hi All We've designed a survey looking into the use of social media sites by those with RA to...

NRAS consorting with Government again This time about our ability to work.

The NRAS are working again with the government on the new green paper about our ability to work its...
shazbat profile image

Impact of Coronavirus - NRAS Survey

Hi Everyone, I hope you're all keeping well during this time. As part of our work to support...

Moderation team

See all
KateL-NRAS profile image
KateL-NRASAdministrator
Donagh-NRAS profile image
Donagh-NRASAdministrator
Nicola-NRAS profile image
Nicola-NRASAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.