New NRAS Report

[Nik8210]

Just seen a new report NRAS are launching about the burden of RA while I understand the aims of this might be valid why is a charity designatied to support people suggesting that we are a burden.

It may be only in the title but it demonstrates the current government attitude that sick or disabled people are a burden. I work paid tax I have rights and responsibilities I am not a burden on society I simply have health issues

I have made a career working in Health and social care and if I directly suggested to a patient or service user they were any sort of burden it would be a displinary offence and here is a charity condoning a title like this.

The report into Scottish care last year again has some wrong assumptions it it's research and it seems yet again this charity has made a mistake.

[Ailsa-NRAS Partner NRAS]

Hello Nik8210. You have the wrong end of the stick here. The BRASS Report was organised and undertaken by Chester University on the Health Economic Burden of RA across 10 european countries and they asked us to be involved in helping them to develop the survey. We really need this kind of data because one of the things NRAS and British Society for Rheumatology are trying to do is to get NICE to include cost of loss of work/early retirement and wider societal costs (not only NHS or social care costs) in the health economic modelling they do which influences whether they think a new drug is 'cost effective' as well as 'clinically effective. Currently they don't consider these costs and only take into account the costs to the NHS and social care so they don't allow the NHS to use biologics and biosimilars for people with moderate disease (a DAS score of less than 5.1) who don't quite meet the criteria to go onto a biologic, but are not doing very well. This constitutes quite a large cohort of patients and often these people have to remain on steroids to keep their disease under reasonable control which is not ideal. Having spent 20 years on steroids myself, I know only too well the damage they can do.

No-one is suggesting that people with RA are a burden to society, but the disease itself is a burden to individuals who have to live with it and the consequences of it and inadequate treatment or delays can increase the 'cost' burden of treating the disease which is why we work so hard to try and reduce variability of access to care. This kind of research data can enable NRAS and others to campaign at CCG and government level to improve services for people with this disease. The study presents a bottom up comparative approach to quantify the burden of disease for people living with RA. I hope this clarifies things but please do email me if I can help further. ([e-mail]).

I can assure you that the purpose of all the social research we undertake is to improve services for people with RA and JIA.

[Nik8210]

I am not challenging the need for data just the language that is used people who are sick or disabled should never be labelled as a burden to society economically or otherwise.

[Eiram50]

Whilst I take your point and agree with what you're saying, I would not have understood "the burden of RA" to mean the person as the burden, but the disease itself as the burden?

Marie

[helixhelix in reply to Eiram50]

Me too...I immediately thought of the economic burden of the disease.

[AgedCrone]

I didn't get the impression this NRAS study was saying people with RA are a burden....I thought it was meaning that people who have RA carry a burden & what can be done to help them/us.

[Nik8210]

No they are trying to find the monetary cost to society of supporting people with RA to justify the cost of giving us more expensive drugs.

Whilst I understand the need for the research medicines should be offered on the basis of need not costs.

Also when better more expensive drugs become available you have already proved that they are not cost effective for the NHS to deliver and in the long term created issues people.