Enjoying a meal together
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.
Yesterday I didn’t function as a business person, in fact I barely functioned at all.
I had toothache, to a level I’ve never experienced before and I’ve given birth three times. It built up over about 24 hours and I did that female thing of thinking it would get better, it would get better, it would get better. Have a paracetamol or two and all will be fine.
However, when I tried to floss the area where the pain seemed to be coming from, I almost fainted. Some one had stabbed me with a fine red hot poker in my mouth.
Toothache - my pain was greater than yours!
Now anyone who knows me, will know that I’m not backward in coming forward about my personal experiences of the health service. When I’m making a dentist appointment I have to wait months, not weeks, to fit my family in for routine checks. My dentist is an NHS dentist so I accept this and book well in advance. My dentist is also a mum of two beautiful girls and she often has time off during school holidays. So you can see the problem? I’m a mum and want to book appointments in the school holidays and my dentist isn’t working. Routine appointments are not instant.
So coping with terrible pain, facing a day of work including an important interview with a contributor for a magazine article, I really didn’t know how I’d get through. I called my dentist, tried to explain and was able to book an appointment for today. Not too bad, indeed quite impressive.
Within two hours, two things changed. My interview was cancelled, not by me. And the pain got even worse. Suddenly 10am today seemed like a month away. It was a mountain too high to climb. I called the dentist again and to my surprise, they fitted me in within the hour.
How I drove there I will never know. The only thing which helped the pain was very cold water, so I had to slurp water every 20 seconds just to stay upright. Luckily my dentist isn’t far away but I was very aware that I was not functioning properly. When I got there I must have looked awful as I was told to go straight up.
My dentist tested the area where the problem lay and I almost hit the ceiling. A failed filling was removed which required three injections so I could cope with the pain. A temporary filling was fitted. With a numb face, I left that a warning that the pain would probably return for a while until things had settled. No abscess, no infection – a crack in the tooth. Would try to save it, but I might end up losing it. So be it.
Reflecting on this experience has made me think two things – how responsive my dental practice was in helping me out and how they understood instantly how much pain I was suffering. Thank you Clyde House Dental Practice of Bath Road, Old Town.
It also made me think more generally about those who are disabled by chronic pain. At about 3am this morning, the pain almost disappeared. It was quite instant and has transformed me, I could go to sleep for a start. I cannot imagine how anyone can deal with strong pain day in and day out and function normally in any way at all.
Just 24 or so hours of this made me look at the experience of at least three people I know who deal with unbelievable pain every hour of every day. You have my respect.
I’ve been a bit slack on the blog front recently – one of the reasons being that I’ve not been well, and having three children, we’ve passed it around. A severe throat infection that is.
Having had a few weeks of nasty illness in Swindon, I’ve had several encounters with the health service, particularly the out-of-hours service, and it pains me to say – it’s not great.
What’s happening to our NHS in Swindon?
When my first two girls were born, only two years apart, I never worried if they needed to see a doctor out of hours. We had an excellent service.
You would call, make an appointment, head off to a surgery on an industrial estate, never wait more than half an hour and be sorted. In fact it worked so well, that it was easier to see a doctor than during regular hours.
Now I find it’s all a hideous, frustrating mess.
I keep asking myself why? Why do we seem to have more complication than ever? It’s as if we, the patients, are being kept at arms length unless our illness is between 9 and 5. And even then you feel like an irritant rather than a patient in need of help.
First I was very poorly and asked for a GP to visit me. I knew it was’t an ambulance job, but the last time I felt that ill was about 20 years ago.
I have lived in Swindon since 1997 and have never asked a GP to visit – the doctor was so rude, saying he served 200,000 patients in the area and wasn’t coming out for a sore throat. My husband tried to explain that I had pains across my back, felt sick but he refused. Hubby explained I was too ill to sit for hours in a waiting room, doctor refused. When I grew up in the 1970s, you only had to tell your GP you were ill and he came. No quibble, no question. My, how things have changed.
I struggled on for another night and called again the next morning – Saturday – and I did go up to the out-of-hours centre (but a centre which is now only for certain conditions deemed to be serious but not too serious, there’s a list on door). Ironically the lovely nurse who saw me was very worried and I was admitted to A&E, then overnight for tests. I was also given antibiotics, and am now waiting for two follow-up outpatient appointments. The pains in my back worried the medical staff – but clearly not the emergency doctor the night before.
I must stress that once within A&E everyone was supportive. It’s just why should I have to go through all of that to get treated. The original GP must have had access to my records, so would know that I’m not the sort of person to call someone out for a stubbed toe.
A week later, late Sunday night I knew I had to take my daughter to the emergency GP’s. She was showing the same symptoms. This time I was told that a GP would call me back within the hour. I called back an hour later, was told I would get a call, but they were very busy. I did finally get a call but was told to go up an hour later. When I arrived they weren’t very busy, just steady. At worst during my three and a half hour visit, there were eight patients. But no nurses and one doctor. And of course a receptionist.
One patient was a baby, aged about ten months, clearly with a high temperature, sweaty and hot. That family waited four hours, while others came and went in a much shorter time. Why they didn’t just march round to A&E around the corner, I’ll never know. When we saw the GP he was very kind, prescribed medicine, apologised saying two nurses had gone home, short staffed. SO NOT BUSY, JUST SHORT OF PEOPLE.
The following day, my hubby had same symptoms and no voice. Called surgery this time. Thought I’d make an emergency appointment that day – was told that a nurse would call me back. WHAT IS THIS ‘SOMEONE WILL CALL YOU BACK’ RUBBISH? Why can’t you just make an appointment?
I explained that my husband couldn’t talk but was capable of driving to the surgery if he could have an appointment. No, someone would have to take the telephone call. Could I wait half an hour? I had to go to work, I explained. Anyone would have thought I’d said I was going to commit burglary. Going to work? I should be clearly available at their convenience. Eventually a nurse did phone, and within 10 seconds offered an appointment later that morning.
What’s happened to our service in Swindon that we now have this mess? There’s no customer service, little apology, it feels as if we are expected to be grateful for a long-winded process? Where are we when a sick baby is held by its mother in front of a receptionist for four hours without being seen?
What's the score with Swindon's out-of-hours GP services?
Off to find out-of-hours medical help...again
Have you ever had an evening where you’ve been frustrated because you can’t easily access a doctor when your child is ill?
When you know what’s wrong but you might need medicine so you will have to see a professional?
I’ve just had such an evening at home in Swindon…again.
When you have children you learn many things which have been hidden from you before. Such as, why do children get really ill really quickly? And why, when this happens, is it late at night or at the weekend? Or the week when you are working full-time as a big project comes to fruition?
All of those things have crowded in on me over the last 24 hours.
My child came home last night with a temperature and a sore throat. Taking a look showed a clear throat infection so a trip to the doctor was unavoidable. It was 7.15pm.
When my first child was born, after hours care in Swindon was excellent and easy. There was a number to ring, you called the number, explained the situation and then got a time to attend the clinic on an industrial estate in town. On site, there were a number of cars for doctors who went out to do visits.
Now things are more confused. The previous facility was replaced by another near the local hospital – the Great Western. Again you could call as before, or you could turn up and take your chances with the queue. I’ve done both.
That usually worked fine. Then somehow – and I admit I missed it -things changed. The last time I took one of my children to that facility there was a huge sign on the door. It said,like accident and emergency, they did not deal with minor ailments. This included sore throats, sickness and diarrhoea, just two of the things that afflict children all of the time and often need medicine. And there was another walk-in centre in town. So off we trekked to that place in town and waited for two hours. Only to be told then that the severe throat infection was viral and did not need any medicine.
This time I made the call and waited an hour to talk to a doctor (why do we have to do this?). A call came through but I didn’t get to it in time – they called off after three rings. So I called back, apologised and asked to speak to the doctor. This was within 30 seconds of that call. No, I had to wait again. Another hour. By this time, my four year old was in bed, it was 10pm. Nevertheless the GP asked me to take him any way.
So off we went, complete with sleepy child in bed clothes. Luckily there were only two in the waiting room. The big sign on the door was gone but it was at reception where as I went to the window (the male receptionist was not on the telephone) put his hand up to shoo me back and said ‘I’ll be with you in a minute’. What is it that such medical facilities can make you feel like an irritant, rather than a customer or client?
So I read the sign again. This extraordinary sign that said ‘like accident and emergency we don’t deal with minor ailments’. Some I could understand , like minor bumps and bruises, but others I didn’t get.
What was this place for then? What is minor and what is major and what’s in-between? Is this the in-between place? Sore throat was on the list of minor ailments but here I was with a child with a sore throat. Is it okay to go to the in-between place if a doctor says so?
We were seen quickly, no medicine required, told to come back if things got worse. That part of the service was great.
Overall, I’m confused by the out-of-hours service. It used to be clear and straightforward. Now it’s murky, requiring parents, it seems, to self diagnose and then choose which is the most suitable place to visit. In other words, waste many hours finding the right place to go at the wrong time of day.
When I was a child I suffered many, many ear, nose and throat infections – and my GP visited me at home every time. I remember him well – Dr Baizely. I don’t expect that now of course. But I do expect something better, something that works for me as well as for the NHS. It doesn’t feel efficient.
Surely there’s got to be a better way? What’s it like where you live?