As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis...
Portia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.
You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.
There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.
I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.
Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.
Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.
Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.
Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.
For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.
In this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.
Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.
Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.
The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.
The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.
The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).
For more information please contact Kristy-Jane Martin at firstname.lastname@example.org