Caring for a loved one with Ankylosing Spondylitis
In this blog, Geoff discusses how carers' involvement is central to fostering lifelong self-care practices.
This also applies to Axial Spondyloarthritis (axSpA), Spondylitis, and any other form of Spondyloarthritis.
Contents:
1. Recognition of carers is central to our best life with AS.
2. Our carers are the strongest single determinant of us sticking to lifelong self care practice such as Yoga for AS.
3. Your family and friends say they want to help you, to learn safe self care, education about AS, and to be treated as a whole family, not only the person with AS.
4. What do people with AS say they want for their carers/family/friends?
5. What is the Triangle of Care? It's when professionals, carers and people with AS work together.
6. 10 simple ways to make the Triangle of Care work.
Recognition of carers is central to our best life with AS
Your family and friends are in a relationship with you; now that you have been diagnosed, they are also in a role with you.
Whenever I’ve raised the issues of being a carer, people with AS and their carers have said to me, “but we are married, we're in a relationship”. That doesn't change, you are still married. But the carer is now also in a role. It's something additional, not instead of.
UK law says you are a carer when you provide substantial and regular care. Informally, it means that you manage a whole lot better with the support of family and friends. And a whole lot worse if you don't have a main carer.
It’s tough for them too. Caring is not just about giving. Our illness has huge effects on family and friends. The Canadian Spondylitis Association (CSA) research on caregivers found, “88% responded that their own health has been affected by caregiving”. Stress, feelings of being overwhelmed, anxiety, and caregiver burnout/compassion fatigue were most common, plus depression and isolation. The summarised report can be found on this page.
Yet Rheumatology seems to be years behind. We’ve had 40 years of UK legislation and a small library of policy exhortations recognising people who look after others with a disability as carers. There is so much resistance to using this word even.
I read a lot of the AS research about “exercise” and it is rare even to use the word carer, never mind talk about how the involvement of family members is central to commitments to lifelong self care.
These two examples below are examples of a good progress of carer recognition:
Spondylitis Association of America has a core value: “Inclusiveness: We operate in a spirit of inclusiveness by providing opportunities and forums for our members, patients and caregivers to be represented and heard across activities.” You can find the SAA full Strategic Plan in this page.
The British National Axial Spondyloarthritis Society has a vision to provide “advice to people living with AS, their families, carers, service providers and employers”. This is taken from the 2021 Annual Report & Accounts, which can be found in this page.
Our carers are the strongest single determinant of us sticking to lifelong self care practice, such as Yoga for AS.
AS is for life. So we have to stick at our self care practice.
We are much more likely to build our “stickability”, our sticking at regular safe practice, if we have the support of carers, family and friends.
Carers are the single strongest determinant of stickability.
So what is the point of giving us advice to exercise without including our carers?
Your family and friends say they want to help you, to learn safe self care, education about AS, and to be treated as a whole family, not only the person with AS.
Support, knowledge, information, so that they can help.
To learn easier movements to relieve the stiffness. To learn safe stretching, so that they can join in with your yoga.
Carers whose loved one is recently diagnosed say they want education about AS and to learn what helps.
To be treated as a whole family, not only the person with AS.
What do people with AS say they want for their carers/family/friends?
It seems unbelievable, but there is a real absence of research about what we want for our carers.
Some people with AS say they don't want their family to know how much they suffer. Others say that they could not cope without the full involvement of their family, like being chivvied along to do some stretching.
What is the 'Triangle of Care' ?
It's when professionals, carers and people with AS work together.
AS Health and Social Care Professionals - The UK NHS says there are only about 700 Consultant Rheumatologists.
People with AS - At a population prevalence of 1 in 200, there are around 260,000 people over 16 in the UK living with AS. And the population prevalence seems to be increasing such that 1 in 100 is now being used in the US.
Family members/carers - 3 or 4 people giving substantial and regular care easily means around 1 million AS carers in the UK. (But counting carers is like herding cats).
It’s obviously best for all of these to work together as allies.
A NASS funded “review of social media showed that 63% of of posts from people with axial SpA had negative emotions attached to them.” ‘When we say we’re fine, we know we’re not really fine' | National Axial Spondyloarthritis Society This report shows the impact of axSpA on mental/ emotional health. To take this a step further, it is really important to recognise that Carers’ mental health matters too.
10 ways to make the 'Triangle of Care' work.
1. Use the language of the Triangle of Care, especially the word carer in UK, caregiver in USA.
2. Speak with the carers.
3. People with AS have to take responsibility too. Look after your loved ones by committing yourself to long term self care.
4. Early intervention means reducing the wait for diagnosis, early access to medications, commitment to lifelong self care and early carers’ involvement.
5. There are two sides to the coin. People with AS who have no carers at all are a small minority but are much more vulnerable and take up much more professionals’ time.
There is a vast amount of research evidence showing that people with a long term health condition who have a strong network of informal support from family and friends have much better health outcomes. We can infer that this is also true in AS.
6. All communications can easily involve carers, such as inclusion on invites to assessments, reviews. I recently received a letter about my health saying: “Bring along a friendly face. It will help your health and social care professional if you can bring someone along with you who spends time with you - they’ll be able to let us know how well you’re managing day to day.”
Consent to share information is given in this way.
7. Some professionals are concerned about breaching confidentiality in sharing information with carers. The easiest solution to this is a standard Permission to Share Information document, signed by the person living with AS to give authorisation to health and social care professionals to share information with their carers. It covers everyone’s back.
8. Develop a checklist for action with AS carers . Age UK has done this for work in the older persons triangle of care, you can find this here.
9. Look at great examples of what carers can achieve. Larry Payne, yoga teacher, led this master class for the Spondylitis Association of America. His brother Harold has AS. SAA's Newest Exercise Video, Back in Action Again,
10. Learn more about the law and good practice Carers' rights here
