This is part two of a story which I started telling during national Carers’ Week last week – it’s very easy to have a stereotypical view of what a carer looks like. However, in my experience, no one chooses such a role. Life simply demands it – and it’s not easy and support can be sadly lacking. Please feel free to comment and share Steve & Robert’s story….
I met both Steve and Robert where we spent an afternoon discussing their lives together in the garden of their very quintessential English home in Wiltshire. I think, I should clarify, given the context of this article. I met Steve for a couple of hours before Robert joined us.
When he did I was struck by two things immediately – how young he is at 44 years old, and how ill he looks. His movements were so deliberate and very slow as if every step took an effort of will. I felt his taking the time and trouble to meet and talk to me was important however bad a day he was experiencing.
The couple have been together since 1999, and they were one of the first gay couples in Wiltshire to enter into a civil partnership on December 22 2005. Professionally Robert is a costume designer and the couple had met when he was working on a children’s television programme.
Steve said: “He was, and is, a very good-looking guy. He had such a zest for life, he was hugely compassionate and generous. Often in the media industry you work alongside people who are very self-obsessed and quite shallow but I knew very quickly that Robert was different. He’s made me become a better person myself. He has a strong spiritual belief, loves nature and the countryside – while I was a complete townie,” Steve, 52, said.
Life was good. A couple in love, with a great social life, spending much time in London, both earning a healthy living and then moving to the countryside to a dream home close to one of Robert’s favourite places in the world – Avebury.
Things changed when, about seven years ago, Robert caught a summer ‘flu’ but just didn’t seem to be able to get rid of it. Numerous visits to the GP led to a diagnosis of a virus. It was several months until a different diagnosis was made.
ME/CFS is a poorly understood condition and because there is no definitive medical test, some people still do not believe it actually exists.
The Countess of Mar, in a debate in the House of Lords in October 2011 stated: “ME has been classified as a neurological condition since at least 1968… however, for all these years, sufferers from this awful debilitating illness have been ignored, derided and mistreated… It seems that no matter how often ministers and senior officials confirm their acceptance of the seriousness of this condition, nothing will change until the culture both within and outside the NHS changes.”
ME/CFS is a debilitating neurological condition that affects at least four in 1,000 people; women, men and children of all ages and backgrounds. It causes persistent, profound fatigue that is not cured by sleep; muscle pain that worsens after any physical activity and inflammation of the brain and spinal cord. It can be mild to severe, and for many people it lasts for years. It can sometimes get better and it can often recur. There is no known cause, treatment or cure. It’s more common in women than men.
Steve said: “I’ve become aware of the government gradually dismantling the safety net which we’ve had in place since the end of World War II. If you fall into difficulty, you are now very much on your own.
“It’s an enormous shock when the wheels come off, and you realise there is virtually no help available. We are an extremely rich country – more billionaires live in London than any other capital city in the world.
“According to the Sunday Times Rich List the wealth of the richest has doubled in the past five years (15% rise in the past year alone).
“Yet we are sitting passively watching the dismantlement of the welfare state – something we could afford during the post-war austerity years, but something we are told is too expensive now. I worry for others who might find themselves in similar or worse positions due to no fault of their own, just the misfortune to be ill.”
“For people who are really sick and need care there is now the extra suffering the govt policies / Atos have brought on the long term sick, and cuts in services. If we are struggling and finding it hard my heart goes out to people in more difficult circumstances and for people struggling on their own with no one to care for them. I can’t imagine how they cope.”
Steve has struggled with the fact that there appears to be no practical support for someone in his situation, little access to any kind of respite and, having exhausted their savings, little, if any, financial support.
In order for Steve to work at all, he has to rely on the generosity of friends to come in to spend time with, and care for, Robert when he goes to work. It also means planning has also entered Steve’s life in a big way.
“Carers Support Wiltshire has been good at offering an ear. It seems that there are plenty of places where one can get some emotional help or telephone counselling but to be honest it’s the practical help and assistance that would be more useful.
“I often have a problem that in order to leave the house and go to work I’d like to be able to request physical help from someone who could come and spend an hour or so supporting Robert while I’m away and ensuring he has food at meal times as he is often unable to prepare this for himself.
“But this kind of practical help isn’t available and certainly not at an affordable price. Being a carer has greatly reduced my ability to earn and help is not available at all to those who rely on sickness benefits. To get this you really have to turn to private care agencies where you are likely to get a different person on each occasion which is likely to be more distressing for the person needing the care.
“We already see how appalling this kind of help is for older vulnerable people requiring care in the home – a rushed 15 minute visit simply isn’t good enough.
“But these things cost money and it seems we as a nation are not prepared to fund it. I have a stressful situation coming up in August as I have been offered a job I would like to do but I will have to spend a couple of days away from home in Edinburgh. This will be very stressful for Robert not having me around to give the support he needs. It would be great if there were some official support I could rely on – even pay to contribute towards.
“Mornings are not good for Robert, he gets very disturbed sleep is an integral part of his illness and often he won’t be up until at least 10.30am.
“It’s very important to his health us that he eats well as his body is unable to function at all without adequate and good quality nutrition. So we don’t have any processed foods at all. So I have to prepare breakfast and then I have to plan meals and cook ready for the day – especially if I need to leave to go work.
“I do have to arrange for someone to come around and spend time with Robert and ensure there’s some food which can just be popped in the oven.
“This means I have to work from home a lot but sometimes that’s just not possible. When you are directing a programme like the Graham Norton Show you have to be in the tv studio on set and on time because that is how our show is made.
“This is the job that I love and I obviously need to work to earn a living to support us both. But sometimes it makes me feel very bad, really awful when Robert is so ill and just doesn’t want to be left on his own.
“But the world of telly is demanding – people are sympathetic to a point but you fast realise when you are self employed people just want you to get on with your job without making a fuss.”
Gone are the days when Steve can stay behind after work for a drink with the rest of his work colleagues. He feels compelled to get home as quickly as possible if Robert has been alone for many hours.
“I have no social life outside of my life with Robert. This means I feel a bit estranged from my colleagues and after a while, socially, you just get forgotten.”
None of what Steve has said is news to Robert. He’s well aware of the impact his condition has had on his partner.
“I know if I’d been on my own I would have gone under,” Robert said. “If I look back at myself in the 1980s and 1990s, I was a media worker leading an exciting and fulfilling life. Now I’m a shadow of my former self. Steve is my support and my rock and like him, I do often feel that there is too little compassion out there.
“We need to have more compassion for people. I’m a very social person, I loved my job and my life and I didn’t want to lose it. I feel guilty that I’m ill so much of the time and guilty that Steve is in this with me.”
Robert has found some solace in writing both journals and books and in his art. He hopes that one day he might be able to publish these or find an outlet for some of his work.
Robert said: “The support needed for people with these conditions is practically non-existent. As there is no effective treatment you’re essentially left on your own. Alternative therapies such as acupuncture are very effective in relieving pain for example, but they are a hugely unaffordable expense for most people.
“Travel discount passes or parking privileges would be hugely helpful due to the extremely restricted mobility, but regulations make it nearly impossible to qualify for one.
“Isolation is a particular problem for many disabled people with restricted mobility and lack of help with this means that you are essentially left on your own to cope with very little support. It certainly makes you one of life’s survivors.
“I am speaking mainly about the condition I have – CFS. It’s a condition with an invisible disability. If the disability is not immediately apparent, then it is often side-lined and misunderstood.
“It seems to me and many others the current government are targeting the most vulnerable and that’s is a shocking insight into where we find ourselves in modern Britain.”
Steve said: “I have to say when I look at the values of modern Britain I am ashamed. Hate crimes against disabled people are at their highest levels since records began, with an increase in 50% between 2009 and 2011,. These figures correlate strongly with the “welfare reforms” brought in by the government. What the general public are unaware of, is that 6.5 million provide unpaid care to family, friends and neighbours suffering from long-term physical or mental ill health, disability or old age, saving the state £119 billion a year. There is also an adverse effect on the economy as a whole through losing skilled workers who find the conflicting demands of both caring and working impossible. More practical support for carers would enable more carers to work.
I understand that public money is tight and that there needs to be some form of means-testing for benefits, but providing services should be an equitable asset for the population as a whole. The threshold for getting help is now so low, you have to be virtually destitute before you are entitled to very small amounts.”
Every day 6,000 people will take on a caring role in the UK. It’s believed there are about 6.5m people offering unpaid care to a family member or friend.
Carers help with personal things such as getting someone washed and dressed, turning them in their sleep, helping them move about or administering their medication. They also help, or take on complete responsibility for tasks like shopping, laundry, cleaning, cooking, filling in forms or managing money.