The purpose of Arthritis Ireland’s Clinic Referral Programme is to provide a direct route from hospital clinic to Arthritis Ireland, allowing the newly diagnosed and vulnerable to begin the journey to patient empowerment and effective self-management. For those that have been living with arthritis for a longer period and are experiencing a flare or difficult time, it can be extremely helpful to link in with Arthritis Ireland’s services and supports.
I really appreciate how quickly everyone reacted when the diagnosis was made, after a couple of tough years. It’s been really good to know there is support available. It’s been brilliant and very professional. I’m much more positive and confident, and I’ll manage things going forward. I would absolutely recommend this programme to others who are newly diagnosed, and I hope it can be brought to all the clinics – patient referred from rheumatology clinic. Anecdotally, we know that people are lost on diagnosis, so the principal of the programme is fantastic – helpline volunteer
It was understood that the newly diagnosed were a cohort of our community that could be approached earlier in their journey with arthritis and that direct referral into Arthritis Ireland rather than handing out our contact details and leaving it up to the patient, was the best course of action.
The programme was first piloted in five hospital centres to see that this method was successful; for patients, clinics, the Arthritis Ireland Services Support Officer (SSO) and volunteers.
One rheumatology ANP involved in the pilot said “the referral process could not have been easier. That’s why (Arthritis Ireland) got the referrals, 10/10 there. We definitely felt supported to be able to tell patients that they would get the call from (Arthritis Ireland) to discuss any general queries. It was great to know that patients were being made aware of the support services available out there.”
Two of the standout comments from the participants emphasised that the referral calls reduced isolation, gave information and empowered them to be more confident about their situation.
“I am isolated, alone, with no carer and I can’t go anywhere so I really appreciate these calls as they show I’m not the only one like this.”
“I found it helpful and informative. It did sort of make it real, so I put the information pack to one side for a couple of days and then came back to them. I actually didn’t know whether I wanted the call or not at the beginning. I was afraid of the unknown and what it would be like. However, when it was over, it made me look at things differently and accept things more. I let the information come to me and felt much better afterwards. So much so that when we arranged the follow-up call, I was actually looking forward to chatting to (SSO) and telling him how I was doing.”
It can be overwhelming to hear about all the various ways arthritis can impact us at the very beginning. What we have learned to do is evolve the service so that we continue to emphasise the role of the helpline and peer-to-peer services. The patients are made aware of all the supports available, but reminded that they may not need them all immediately.
In mid-2021 a scoping exercise was carried out to assess the need for a new service for the newly diagnosed. Extensive research was undertaken into how the programme would look if it took place.
The National Rheumatoid Arthritis Society (NRAS) in the UK, had set-up a similar programme and numerous meetings were held between both organisations and within Arthritis Ireland to ensure the programme was fit for purpose. Collaboration across the Arthritis Ireland team ensured the collateral, promotion and forms were in place to roll the programme out in Autumn 2021. The pilot project involved five clinics providing geographical spread while maintaining accurate recording of all data and timely responses to all referrals.
As we were going through lockdowns, individual zoom meetings were held with each clinic to brief them on the programme and its operation. Consultant rheumatologists, advanced nurse practitioners, clinical nurse specialists and clinical specialist physiotherapists attended.
The service launched on October 4th, 2021, emphasising supported ‘self’ management – whereby the individual patient takes control of the management of their condition but is supported by Arthritis Ireland at every step of their journey.
The pilot had 60 referrals and there were 39 successful or completed calls (65%) out of 60. When the service was opened up to all newly diagnosed patients in all clinics across the country in 2022, successful or completed calls were 50%.
Throughout 2022, the Services Support Officer visited rheumatology clinics across Ireland to inform staff of the benefits of the Referral Programme. It is important to stress at all times that this programme runs parallel to the medical treatment provided by the clinic and offers the time and space to discuss lifestyle and day-to-day issues brought up by life with arthritis.
In late 2022, the Arthritis Ireland helpline underwent further changes and upgrades when it attained the Helplines Partnership Standard and accreditation. This gives further confidence to all callers and participants in safeguarding and privacy.
With all public clinics in Ireland now referring any patient that they believe would benefit from specialised and individualised support from the Referral Programme, there has been a 33% increase in the number of referrals and completed calls are running at 70%.
Every single patient that is referred via the Referral Programme is spoken to by the Arthritis Ireland Helpline. As we move further into 2023 the Arthritis Ireland Clinic Referral Programme will seek more and more referrals from rheumatology clinics throughout the country and anyone with interest in the programme should contact:
Peter Boyd – Arthritis Ireland Services Support Officer email@example.com