Guest blog: A Decade of Real Change

19/01/2020
by Garreth

by Clare Jacklin, Chief Executive, NRAS

I heard a good joke during the Christmas break –

Question: What do you think next year will bring?
Answer: How would I know…? I don’t have 2020 vision!

Albert Einstein is widely credited with saying, “The definition of insanity is doing the same thing over and over again but expecting different results.”

Now, I’m not for a moment saying we’re all going insane but I wonder how many of you reading this feel (as I do) a sense of déjà vu that we’ve heard the same thing over and over but little change has occurred. We hear so much rhetoric about ‘shared decision making’, ‘patient centricity’, ‘shared care’ etc. but still our NRAS helpline gets far too many calls from people who feel excluded from their own treatment and care! These are people without power to choose or influence or contribute to their own therapy.

NRAS has been leading the way since 2001 for the rights of those living with RA and JIA to have access to the right care, at the right time provided by the right people. This is a challenge that is still ongoing; despite so many promises and policies being made by various stakeholders over this last decade, there is still blatant evidence of the UK being victim to postcode lottery health care.

People living in the UK with inflammatory arthritis have access to the very best of medicines, the very best of multi-disciplinary team care but only if they happen to live in certain areas of the country. Too often we are hearing from people who not only struggle with the day to day issues of living with RA or their child with JIA, but are battling to get appointments, fighting to get onto particular treatments or being denied choice or input into their care. So, who or what is making these decisions? Not surprisingly in my opinion it is the loudest voice of all that calls the shots… money! That old adage ‘money talks’ has never been more evidently true than it is today. Short term gains are prioritised over long term improvements to individuals’ lives, the NHS as a whole and the UK economy.

Within the first half of 2020, NRAS will be launching our two new websites (one for NRAS and one for JIA at NRAS), as well as the first of our e-learning modules. All of which along with our informative resource booklets are aimed at giving people living NRAS logo with RA or JIA the knowledge, tools and confidence to keep on demanding what is rightfully theirs… the right to be part of their own care and treatment. The NRAS Right Start New2RA service (launched at BSR conference 2019) is also evidencing that giving individuals the right information at the very beginning of their journey with RA is making a significant difference to their prognosis and outcomes. Better outcomes for patients leads to less demand on NHS services, improved adherence to treatment which in turn reduces wastage of medicines, individuals who have the right care at the right time also are more likely to stay working hence contributing to the economy which in turn is reducing the strain on the welfare system but most importantly improving their quality of life and reducing the risk of developing depression and anxiety. So, if ‘money talks’ then surely all of this is currency for conversation!

This is why I was keen that NRAS re-joined ARMA so that collaboratively with all our fellow ARMA Members we can be bold and brave as we enter this new decade to bring about and support new initiatives that can contribute to efficiency savings and investment in projects such as the First Contact Practitioners initiative. I am hopeful that by engaging with and offering supportive training to practitioners in primary care that NRAS, along with other ARMA Members, can bring about earlier diagnosis for many with inflammatory arthritis which in turn can contribute to all of the above.

In summary, my 2020 vision is to banish those déjà vu moments of the last decade and see clear change for the better, living up to the NRAS strapline of Changing Minds, Changing Services and Changing Lives for all those living with RA and JIA.

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