A chronic illness disrupts a person’s whole life, not just one part of their body. It makes sense in that case that the care they receive is holistic and focused on the whole – and even more sense if this integrated care is community-based.
This week Margaret Hawkins spotlights the work of CEART Health Partnership in Callan, County Kilkenny. It has been a pilot service for the past 17 years and uses an integrated rehabilitative approach to treating people.
“CEART owes its origins to a group of visionaries in the Callan area,” says Julianne Maher, who is project and clinical manager at the centre.
A former International Red Cross, nurse she was recruited to set up the centre in 2002.
CEART is an acronym for Community Enterprise Action for Rehabilitation and Therapy and echoes the Irish word ceart, meaning correct or right. The right to rehabilitation.
“It was these people with energy and resolve – a local group that included GPs, representatives from the County Council and the then health board and other caring organisations and patient representatives – that lobbied for the partnership to be set up in 2002.
They could see the value of a quality, integrated rehabilitation service for people with chronic illnesses.
“We are patient-centred. That’s at the heart of what we do here,” she says.
Callan town’s long record in community care also helped make the vision a reality, she believes.
“Callan is an extraordinary place in the country because it has so many different communities that deliver different services and all these were involved in setting up CEART. For example, Camphill and the L’Arche community, which delivers services for people with disabilities,” she says.
“They had the vision back then to see that while there was excellent care available when you were acutely ill and in hospital, there wasn’t enough follow-up care in the community. The goal was keeping people out of hospital or if they were in hospital enabling them to be discharged quicker because supports were there in the community when they went home.”
We cannot take on the complete care of a person, that’s the primary care structure through GPs
Almost completely funded by the HSE, CEART is an established therapy centre for those living with chronic illnesses like MS, Parkinson’s, diabetes, cancer, heart disease and arthritis. Therapies provided include physiotherapy, psychotherapy, massage therapy, art therapy (a form of psychotherapy) and acupuncture. Referral is by a GP or hospital doctor.
“We cannot take on the complete care of a person, that’s the primary care structure through GPs,” Julianne says.
“That doesn’t mean that referrals can’t be stimulated by other health professionals in the community, people like the public health nurses and speech therapists and community physios, but it has to be linked in with the GP as the GP is the custodian of a person’s care in a community.”
Listened to and understood
Those who use the centre (albeit in a virtual way at present because of pandemic lockdowns) speak of feeling listened to, valued and understood. Instead of having several appointments where only one aspect of their care and illness is looked at, CEART adopts a whole-body approach.
We now have everything under one roof
“Sometimes doctors don’t listen,” said one service user in the most recent evaluation report. “Sometimes they haven’t got time to listen... At CEART you’re not just a statistic or a number that comes in the door.”
At the start of its journey, CEART originally rented space in the Camphill community-owned Old Callan workhouse, but they moved to the Old Courthouse in the market town in 2006.
“We now have everything under one roof, something that service users like,” the manager adds.
How it survives financially
When cutbacks came in 2008 because of the economic downturn, management had to think about survival.
“The ethos of the setup is that we are available to everybody regardless of who they are or their ability to pay,” Julianne says.
“It is a publicly-funded, free service but after 2008 we had to cut back to three days a week and introduce a donations box. We don’t know who puts what in it, but there is no charge for care as such. We have to fundraise as well to raise around €15,000 to €20,000 each year.”
Fundamental to the care provided is helping people manage their chronic illness better and to accept that change has happened in their lives, she says. The word “integrated” is reiterated.
“What was very clear to the people who saw the need for this was that when you live with a chronic illness, inevitably you have all kinds of disturbance in your life,” she says.
“Your sleep may be disturbed, your eating habits, your ability to do exercise and there can be huge levels of fatigue also. While the illness may affect one part of a person’s body, we are integrated human beings so integrated rehabilitation is needed.”
All these disturbances can lead to people getting stressed and anxious.
We meet the person where they are at and try to build the support from there. The therapy isn’t proscribed for the disease
“Their confidence can drop too. They may not be able to work anymore either and it can also affect their relationships with their families.”
The really important thing about the care at CEART is that it meets the individual’s needs.
“We meet the person where they are at and try to build the support from there. The therapy isn’t proscribed for the disease. We don’t have a protocol that says ‘you must have this and that therapy because you have arthritis or MS or diabetes’. It depends on the individual and how they are presenting in their particular illness. Everyone presents differently and everyone manages differently so the approach is holistic.”
Manage conditions better
The staff try to provide enough therapy to bring the person to a point where they learn to manage their condition better, she adds.
“A lot of the time people find it very hard to accept that things have changed in their lives, that they can’t do things that they used to do and it can also take time to accept that they have to change the way they do things. It can be about adapting their life to new activities or doing things differently. That’s often where, when someone is going through physiotherapy, they may benefit very much from something like psychotherapy too where they can discuss the loss of not being able to do the things they used to do and the frustration that has built up for them because of that.
We try to support them to see that there are new ways of approaching things
“It can bring them to a place where they can accept that life has changed but that they can be helped and empowered to live the best life they can considering the changes that have happened.
“They can maintain a quality of life. It may be a different type of quality of life, but nevertheless it is a quality of life. A lot of the time people get so depressed and stressed and down because of the fact that they can’t do all the things they used to do.
“We try to support them to see that there are new ways of approaching things.”
Saying “no” in order to put yourself and your health first may have to come into the equation too.
“You have to support people to come to the realisation that they sometimes have to say no. The people around them, maybe even family, can be so used to everything being as it always was ... when chronic illness enters the situation, however, things have to change and it can be about being able to say, confidently, to family: ‘No I’m not able to do that now’, or ‘I’ll do that later’.”
Reaching full potential
CEART’s work is all about helping the person to reach their full potential within their chronic illness.
“It’s about supporting them to achieve in their lives the maximum self-confidence and fulfilment they can achieve despite their illness. That’s our ethos.”
The therapy centre, which had to close from March to August 2020 and is closed at present due to lockdown, is, nevertheless, providing telephone and virtual physio and psychotherapy services to users.
“It has been a very unusual year but we are doing what we can over the phone.”
The integrated whole-body approach and support I received from CEART has provided a safe support system in my life
Of a normal time – which they hope will resume very soon – many patients mention how great it is to access the various therapies under the one roof.
“It saves them from travelling and attending different places,” adds Julianne Maher. “That, and the team working together to help them, contributes to the person feeling that they are being cared for and listened to.”
Julianne finishes by quoting from a service user.
“The integrated whole-body approach and support I received from CEART has provided a safe support system in my life and my quality of life is bearable and enjoyable now.’ The illness doesn’t go away, the pain doesn’t go away but the attitude and way of managing it changes.”
The most recent evaluation of the service stated that CEART’s “approach has provided service users with multiple therapeutic interventions and high levels of support”.
CEART provides services to people aged 18-65 years in the defined catchment area of Kilkenny city and county and a small border area of Tipperary.
The fuchsia flower is synonymous with CEART and was represented on the cover of the evaluation report. It represents the community service because the flower is common in Ireland and its Irish name, Deora Dé, means tears of God.This conjures up an image of the suffering associated with enduring an illness while also acting as a reminder of the spiritual journey of coping with health deficits.
“It sounded the right note for what CEART is about; valuing people. It is a community’s response to chronic illness and the gift that is to patients,” Julianne says.