The National Institute for Health & Clinical Excellence (NICE), which advises the NHS on which treatments to provide, has issued draft guidance stating Gilenya (fingolimod) should not be made freely available on the NHS, because the treatment is not ‘cost effective’.
A consultation will now take place, but if the decision remains unchanged then the only way patients will be able to access the treatment is if their PCT or hospital is willing to make an exception and pay for it – resulting in a huge postcode lottery.
A NICE approval for a treatment means that hospitals and PCTs are legally obliged to provide it to any patient who could potentially benefit.
Simon Gillespie, Chief Executive of the MS Society, said: “This is disappointing news for people with MS and it will leave some people with no effective treatment option. Access to MS treatments in the UK is very poor – in fact people with MS would be better off living almost anywhere else in Europe, and this decision will only deepen that inequality.”
Yet more news on how MS treatments cost too much money.
These articles are hitting home pretty hard for me since my insurance company informed me how much money they are going to charge me upfront every year to qualify for Copaxone.
Category: Uncategorized
I’ve nothing to write about at the minute but that might change at any time – I’m so fickle!
Another song from my past. Loved this then, love this now.
It’s all in the mind.
Having had a week with barely anything to say here, I now find my burning issue – mental health. This is mainly due to the news of the untimely death of Amy Winehouse, which has seen her battles with depression and addictions get picked over by the traditional media ( and by all-and-sundry on various social media outlets ) with alarming alacrity. But there have been other instances where mental health issues, including depression, have been mentioned – like the initiative to promote mental health awareness in rugby league.
It’s as though everyone who’s had a negative opinion about Ms. Winehouse has been waiting for this moment to happen so they can wade in with ill-timed and poorly judged comments about her life. Ms. Winehouse had her problems with addictions too. I don’t and haven’t. I don’t feel I can speak about this intelligently and I’m certainly not going to guess. But it’s the danger of the stark scrutiny of a sufferer’s life and lifestyle that makes those affected by depression shy away from revealing that they have problems. And that they need help. It’s the fear that you’ll be mocked, ridiculed, or worse that stops you from saying something to even the most trusted among your family and friends. It’s the assumption that no-one will understand what you’re talking about and will trivialize it or ostracise you that keeps you quiet. I have my own experiences with depression. I believe this is a common theme with carers. The pressures and stresses of being a carer can make life impossible to bear. Even now, until this post exposes me, I’ve tended to keep quiet about my “dirty little secret”. I find it embarrassing to discuss – shameful even – because I don’t know what kind of reception I’ll receive when I open up.
I wrote about the forms PHQ9 and GAD7 in my post “Wait! What? What Just Happened…..?” . I fill one of these forms in every couple of weeks or so. Depression has blighted my life at various points in my life. I’ve had feelings of very low self-worth from being a kid, but had no idea what it was or where they came from. I was classed by my ( then ) GP as being “highly strung” ( whatever that means ). About 10 years ago, I was in an abusive relationship and was desperate for a way out. But I didn’t want to fight violence with violence which made my frustration with life (and depression) worse. And now, as a carer, I am struck with depression again. I know the feeling of being so utterly despondent that the idea of committing suicide becomes appealing. That my life is completely empty with no hope of ever having anything to look forward to. That I’m a total failure at everything and therefore not deserving of the good things that other people seem to take for granted in their lives. That it would be better for everyone if I was no longer here. These are not the transient thoughts and feelings of someone who’s a bit sad. They’re the result of sleepless nights. Thinking about your life and its problems over and over again and reaching some very dark conclusions. I’ve felt like crying in the most inappropriate places, at the most inappropriate times.
It wasn’t until directly after my first panic attack – that I wrote about a while ago – that I started getting help. Thanks to two GPs, my previous one and my current one, I’ve been able to open up about it all. I’ve now been taking anti-depressants for 4 years. I’ve had some counselling sessions and I’m waiting for an appointment for more. But the catalyst for me to realise the severity of what I was feeling was being able to talk to someone openly. Someone who wasn’t going to tell me to “pull myself together”. Someone who wasn’t going to pick my life apart and make sweeping judgements about me. I hope, now you’ve read this, that you don’t think of me any differently now you know my “dirty little secret”. Because, to be able to reach out for help with a peace of mind, sufferers need other people to have an OPEN mind. Depression can affect ANYONE. Without this understanding, I fear there will be more untimely deaths. And that would indeed be a tragedy.
Not much to say at the moment. So here’s a gratuitous video of Debbie Harry with Blondie.
Another random fact: Debbie Harry was my first crush.
(Source: https://www.youtube.com/)
A day in the life – the start.
You know a bit about me, and a little bit about what I do. This time, I want to give you an insight into 24 hours in my life as as carer.
Are you sitting comfortably? Then I’ll begin. The alarm goes off at 8.30 but I am generally awake before then. I’ll have probably woken up at least an hour before it goes off. We expect care help to arrive ( usually from Maureen who works with us via an agency ) at 9.00 so I need to be up and about to let her in. The care is scheduled for the same time every morning so my wife has a routine. Maureen and I will go upstairs to get her out of bed. Our bedroom is the largest in the house and is in the converted loft. It has the most room for the size of bed we have which has one of those Tempur mattresses – it’s the only mattress my wife can sleep on. Anything else causes her a lot of pain, no matter how comfortable it’s advertised as.
My wife cannot bear weight on her legs and has greatly reduced upper body strength. So once she’s woken up, Maureen and I will swing her legs over the bed and sit her upright. My wife will take a few minutes more to get her equilibrium – she’s prone to black outs as her blood pressure can drop if she’s moved too quickly. Once ready, Maureen and I will lift her out of bed and onto a transfer chair – it’s not a wheelchair as you might recognise it, more like an aluminium office chair on 4 castors. By lifting I mean I’ll lift with my hands under my wife’s armpits while Maureen lifts with hers behind the knees. We’ll spin 180˚ and lower her gently onto the transfer chair. We’ll wheel the transfer chair to the stairs and lift her from transfer chair to the stairlift. ( Note: we have no hoists – we’ve been told that our home is not suitable for hoisting equipment. 1) it would be impossible to get one upstairs. 2) the downstairs bedroom doesn’t have the room. 3) our front room doesn’t have the room. Notwithstanding the fact that, for H&S purposes, TWO people are required to operate hoisting equipment – but never mind. ) Maureen and I will follow as my wife travels downstairs on the stairlift. At the bottom of the stairs, there’s no room for two people to lift her off the stairlift so I’m on my own for this one.
I have to perform a lot of these single-handed lifts during a day so I think it’s worth taking the time to describe them properly. My wife’s MS causes her leg muscles to spasm. In most cases ( but not all ) the spasm makes her legs bend involuntarily. Yet because she has no control over the muscles in her legs, I have to straighten her leg out manually to enable the muscles to relax. The spasms make it very difficult to straighten them. So, back to the lifting – whilst in a seated position, I have to manually manipulate my wife’s legs so that her feet are flat to the floor. This is because, in a seated position, the spasm will make her legs “fold back” under the seat. I’ll ensure her feet are on the floor and she’s in a normal seated position. I’ll ask her to put her arms around my neck while I grab the back of the waistband of her trousers with one hand, and one hand under her right thigh. I’ll ask her to lean forward as far as possible while I rock backwards, using my neck muscles to start the lift. I’ll then use my arms to secure the lift from their positions so I have one arm round her back and the other under her bum cheek ( biology wasn’t my strong subject! ). These lifts hurt her back. I hate causing her pain but I can’t think of another way of lifting her. No matter how many times we’ve described or demonstrated these lifts, we are not getting hoist equipment. Once I have her in a quasi-upright position, I’ll swing her round and gently lower her onto whichever seat she needs to be on next. Every lift causes my wife pain in her lower back while I’m lifting and pain in her legs and hips when I’m manually straightening her legs. It’s crap but it’s the best I’ve got.
If I were a teacher of languages I’d be asking you to write the above paragraph in your vocabulary books under the word “HOIST”. But I’ll settle for asking you to remember this description. When I’m referring to “hoisting” my wife, I’m not using mechanical equipment, I’m using some cobbled together manual lifting thing.
Getting back to the bottom of the stairs…. I’ll “hoist” my wife off the stairlift and onto an attendant wheelchair which Maureen will have positioned while I’m preparing the “hoist”. Maureen will wheel my wife into the bathroom where we’ll both take her pyjama bottoms and incontinence pants off, then lift her on to the toilet. This gives us time to catch breath and to fill the sink to wash the dishes.
After my wife’s been to the toilet, Maureen and I will get the shower ready. The shower is actually one of those mixer style tap and hose things above the bath. Running the water and making sure that the temperature is right, getting all of the towels ready, getting the battery-operated shower seat raised and ready with the non-slip mat on the seat. Maureen and I will lift my wife from the toilet directly onto the shower seat, and remove the rest of her clothes. Again, the spasm makes my wife’s legs fold underneath her so Maureen will keep her body still on the shower while I manipulate her legs and stop them getting trapped under the shower seat when it lowers into the bath. Once lowered, Maureen will shower her while I get on with making breakfast ( nothing complicated – just cereal, coffee and fruit juice ), washing the dishes and sorting the laundry ready to turn the machine on once the shower’s finished.
After the shower, Maureen and I will lift my wife from the shower seat ( once it’s been raised so it’s flush with the side of the bath ) onto the wheelchair. I’ll wheel her into the hallway to get dressed. Why the hallway? Because the hallway has the most space for us to dry her and get her dressed. So Maureen will dry her top half while I dry her legs and feet. We’ll both put my wife’s daytime incontinence pants on her and put her dressing-gown on. I’ll wheel her into the front room and “hoist” (did you remember the meaning?) her from the wheelchair to the reclining armchair that she uses for the bulk of the day. I’ll give my wife her first 11 tablets of the day ( including multi-vitamin ), and give her breakfast. Maureen will tidy the bathroom, the bedroom and the kitchen before she leaves for the day. Trust me, I – we – would be lost without the help we get from Maureen. She is amazing.
I think I’ve written enough for now. I don’t want to bore the crap out of you ( that is if anyone’s still reading this – and, if you are, thank you! ). The above paragraphs constitute just the first hour of the day but each day starts the same way. I’ll split the rest of the day into pieces and save them for future posts.
Stuff you don’t know about me. (Well, most of you.)
A few hitherto ( mostly ) unknown facts about me:
1. I grew up in a small town in South Cumbria. Some people class the town they grew up in as home. I don’t. I have no desire to return there to live.
2. I have no siblings. ( awwwwwww!! )
3. I have no children.
4. My first girlfriend fell pregnant with my child (unexpectedly) and decided to terminate the pregnancy. I wasn’t consulted. This still hurts me.
5. I want to get a degree. For no other reason than to prove to myself that I have the capacity to do it.
6. I love Italy – the country, the people, the culture, everything. I’d be quite happy living there.
7. I have taught myself to speak Italian. It’s taken me two years to get as proficient as I am.
8. I used to play rugby league. I wasn’t any good but I really liked being part of a team and the camaraderie.
9. I have never smoked. I have never taken drugs. And I no longer drink alcohol.
10. An ex-girlfriend’s friends spent an entire weekend trying to get me to try drugs, and didn’t like my refusals. Their persistence became very dull, very quickly. It was a very short-lived relationship.
11. I got *so* drunk on my 30th birthday night out that all I remember is waking up about 6am on a grass verge under a flyover on the A19. I have no idea how I got there and I was lucky to escape just with concussion.
12. I can’t swim and I never learned to ride a bike. ( awwwwwwww!!! again ^_^ )
13. I enjoy painting in acrylic and would love to earn a living from artistic endeavours.
14. My childhood memories are peppered with parental arguments and domestic violence. My parents divorced when I was 15.
15. My relationship with my Dad only improved after he was diagnosed with cancer. He died 7 years ago and now I miss him.
16. I talk to my Mum every day.
17. I broke my wrist at school when I was 8. The teachers didn’t believe it was broken so had to stay in school for the afternoon with my wrist out of place and in pain.
18. I’ve never been arrested. ( I am *so* dull! )
19. I like walking round the house bare-footed.
20. I really like clothes and I like to make an effort in my appearance.
21. I am married ( read the blog. Keep up! ) but our circumstances mean that in many ways I still feel very lonely.
22. I lost my virginity at 16 and since then I have slept with 11 women. I am neither proud nor ashamed of that figure.
23. I love to travel. To me travelling is a much a part of a holiday as arriving at the destination.
24. I like coffee. Especially macchiato. ( Apart from the one that Starbucks likes to refer to as caramel macchiato. This is *not* a macchiato! )
25. I had to take an ex to court to resolve a property dispute. She didn’t think I had the courage or tenacity to see it through. It took me two years but I proved her wrong. And won.
26. I was one of the unpopular kids at school. Y’know, the one you don’t invite to parties and stuff – the one that girls avoid? I still wonder if I’m that unpopular kid.
27. As a kid, my favourite footballer was Steve Coppell and I’m a Man Utd fan. I filled my Football ‘80 sticker album and the last one I needed was a Stoke City badge.
28. I was accident prone as a kid and still have a small, permanent bump on my forehead as a result.
29. I have had conversations with a few well-known people on Twitter but I won’t RT them. ( A gentleman never tells! )
30. I am lucky to speak to so many fantastic people on Twitter.
More things I miss……
1. Falling asleep with her in my arms and waking up in exactly the same position.
2. Waking up without dread.
3. Being able to go somewhere without needing to plan everything to the last, minute detail.
The internet – judge, jury and executioner.
It’s been a quite week for judging people, hasn’t it? It’s been judged that the News of the World is no longer worthy of publication and the 200 mostly innocent people now out of jobs are somewhere beneath amoeba in the grand scheme of life. Journalists give their judgements on celebrities’ private lives, while those same journalists have their choice of writing subject judged as being too trivial for intelligent consideration ( e.g. Sali Hughes on Cheryl Cole ). The world seems to be permanently wearing its collective wigs and robes in readiness for passing judgement on some subject or other.
One such subject of intense judgement was brought to my attention over the last week courtesy of @BrokenOfBritain on Twitter. The story of Shana Williams, a woman whose husband was severely disabled in a car crash, was published by the Daily Mail’s Femail section. The story appears to me to centre around two of her decisions:
i ) not to be her husband’s full time carer, and
ii ) to begin a relationship with another man whilst still married to her husband.
I have a great deal of sympathy for Shana. The life she looked forward to when she married has been denied her. She’s dealt with it all in the way she’s thought to be most appropriate to her and now, with this article, her decisions are very much in The Court of Public Opinion. I have a great deal of sympathy with Shana because of the things that I’ve previously touched upon in this blog and other things I’ve not let out into the public domain.
The article states that Shana has some professional experience of caring as a nurse and has decided that being a full-time carer, a mother to two sons and continuing full-time employment was beyond her. She arranged for her husband to be placed in a care home. I don’t envy the decision she’s made but I do respect it. And I will not judge her. Being a full-time carer is a demanding role – both physically and mentally. I didn’t choose to do it. By which I mean I didn’t apply for it and I didn’t study any specific qualifications to do it. I do it by dint of the fact that the person to be cared for is my wife. The woman I fell in love with and married. Don’t assume that I care for her with a smile on my face and lightness in my heart every day. That’s not true. There are an increasing number of times when the exact opposite is true. I chose freely to do this and it’s a decision I make every day – hell, sometimes every minute. Shana chose differently and has my respect for that.
The paper then goes on to touch upon the fact that Shana has recently begun a relationship with a man other than her husband. This second decision seems to have exorcised those people who love nothing more than to spray their bile on comment sections. Let’s make this clear, Shana didn’t start this relationship with another man immediately after her husband went into care. I’m not going to try and guess what she was thinking. She may have lay awake for many nights contemplating the possibility before beginning the relationship. It might have been an instant attraction that took her by surprise. I don’t know and the article doesn’t make it clear. I’ve read many similar stories on carers’ forums from people who care for their husbands/wives/partners. Some writers have their own solutions to being in an extremely difficult position, i.e. being in an unfulfilling relationship – from escorts to affairs to accepted celibacy. Others have no idea how to deal with this most personal and intimate of subjects. The one common denominator seems to be the anguish they put themselves through . Many, many weeks, months or years of frustration. As I’ve written, Shana may well have been through this too. But, however her new relationship began, she did not deserve the raging torrent of enmity poured on her personal life from malicious commenters.
The Mail article states that “…only those who have made such a self-sacrificing choice have, ( Shana ) believes, the right to judge her." I disagree. She deserves the right not to be judged AT ALL. The right not to have her character assassinated by those who are full-time carers OR those who have no semblance of idea what she’s gone through to reach her decisions. I’ve written about being judged as a carer before. I’m not looking to be cast as a paragon of virtue or an icon of immorality because I’m neither. I’m just me. I face many of the same inner struggles as Shana but our circumstances are different. I don’t know what lays around the corner with my wife’s MS. I don’t know if I’ll reach a breaking point and want to run a mile, never to return. All I do know is that, like Shana Williams found, my life – and, yes, that of my wife – is not what I envisaged when we met 9 years ago. Our relationship is radically different from when we met too. And IF my outlook to caring changes in the future, I reserve the right to have my decisions respected and not to be judged either. You can shove your wig and robe up your arse.
A Husband For A Carer 