A profession for the future?

I don’t always make time to read a newspaper, but since I bought a kindle, I’ve got used to reading the kindle version of The Independent. A couple of  opinions on how best to shore up social work for the future have really got me thinking. I’m sure some people have will have heard of Teach first? Now the idea is being applied to social work. I have mixed feelings about the sustainability of such a program, however surely things cannot get much worse, so it has to be worth a go! Josh MacAlister rightly says, social work “does not have to be one of Britain’s least appealing careers”. Neither however, do careers in the care profession! I just wonder if this concept were applied to ‘caring roles’ if it would revolutionize the profession, or whether even that may not be enough. I’d love to hear your thoughts on this. How do we take ailing professions and turn things around for the better? The Independent’s editorial is favour of MacAlister’s approach. I would encourage you to read it, and vote! 


Back to Social work. I hardly need explain why change is necessary as mistakes make within the profession have been well documented. The most vulnerable youngsters have been let down time and again, just like the young man MacAlister writes about. It’s a great idea… the best candidates, the best training. and straight into leadership/management. Heaven knows the most difficult professions are where the best manages are needed, and starting with children, where the most impact can be made seems like common sense. I really do hope this program achieves all it sets out to do and can be sustained for the future. It can’t come a moment too soon.

Introduction to the realities of illness and disability…

Blogging, but only just…

I’ve been wondering recently, how much of a readership I have left, given how sporadically I have been posting here. In an ideal world, I’d love to post every day, and started out with intentions to do so. Unfortunately, the realities of life barged their way in. I’m beginning to try to wrestle my life back, but it’s best to start from nowhere. If I don’t expect anything, I might just surprise myself! I’m sure everyone living with illness or disability, or both, in my case .will have a vastly different experience.  Let me try to explain why, and what some of this means for me.. This post also answered today’s daily prompt

The same name, different realities…

Certainly, both levels of illness and disability, or one or the other, can vary for some people from day to day, from week to week, and from person to person. Two people with the same’ disability or illness, and even something which manifests itself in similar ways, will still experience it differently. I know someone with cerebral palsy, who up until and including the time I knew them, by their own admission, had never experienced a day’s pain in their lives. I know people with cerebral palsy who have asked me what a spasm is. I also know people with cerebral palsy who can do far more than me before they hit the same level of tiredness, and who are not ‘ill’ beyond the standard colds and flu and whatever. However, I am thankful that I do not have some of the other traits of cerebral palsy, such as epilepsy, or a significant learning disability. The closest I come to a mild learning disability is that my level of spatial awareness is too poor for me to be able to read a map or to learn to drive. I live my life within a restricted geographical area and am happy within those boundaries. Cue panic if I even have to step outside those.

The medical part of the illness…

There are aspects of my disability I can ‘control’ by the way I manage it. Other things, however, have a life of their own, such as my ileostomy bag. I had a meeting yesterday to talk about the management f it, and it turns out I can only use one particular bag cause of requiring a ‘high output’ bag overnight… There are hundreds of styles of ileostomy bags and different pieces of kit, and it’s typical of me that my needs only half-suit one particular system. Those things are very definitely out with my control, and can become incredibly frustrating.

There are many other things out with my control such as what time I get up, and go to bed, how tired I am, how much pain I am in, the affect this may or may not have on my speech, my mood, and my quality of life. The more ‘needs’ you have, the more professionals, and agencies, and clinics you need to allow into your life to help you manage aspects of it. Often it is only about management, not cure. Each person often only sees their part of my care in isolation, so for example, there is a brand of painkiller than would help me manage the shortness of my gut, in a small way, but this has a horrendous affect on my fatigue, and does not manage my pain in the most effective way. There is a treatment I am having to manage other symptoms, but that again, is not a cure, and surgery not an option. Neither is surgery for a reversal of my ilestomy. So I have had to learn to accept these things.

There are some things I can accept, and indeed, even some tings I can ‘relax’ about. I am learning to ‘go with the flow’ even. For example, I am learning not to be a control freak over what food, and brands of food, is in the fridge, to mind the way the washing is put on the airer, or to mind the way my hair is dried. I am learning simply to feel relieved that I can often have these things done for me, thus saving energy I either don’t have, or energy I can use for other things. There is also of course, lots I am still learning, like finding things that can increase or decrease my levels of pain, however small those things are, such as ‘gentle’ (!) exercise at the gym, a nap, or full on sleep in the morning. I think for me, morning naps work better than afternoon ones! All of this said there is still much I wish I could do. Just getting through every day seems to take so much energy.

This was the week that…

So far this week, it’s been unusual in that I didn’t have a ‘sit’/PA-type time on Monday. Plenty of time for a blog post, and article, and a couple of other things? Wrong!

Carer C arrived in t flat right on time as usual, only to disappear just as quickly having been called away to another client who cannot get themselves out of bed. She helped me to sit up, and then left me in bed, with chronic back pain. Bless her, she returned as quickly as she could, did some of her duties and was about to get me washed when someone pressed the entry button on the intercom. Here was the nurse…! A few minutes later, the morning routine resumed. Having found something suspect about the stoma, I sat repeatedly calling my local surgery for an emergency doctor’s appointment, which, thankfully, I got. All of this done, there was the morning gone… indeed time slipped by until 2pm, by which time I’d had enough and phoned a friend. I did get a break in the afternoon as I went off to have afternoon tea with a friend. Now I thought, I could breathe a sigh of relief. My main key holder arrived later to help me put my newest medication in the U.F.O (noisy, spaceship shaped automatic medication dispenser connected to a call centre. Unfortunately, as my friend/key holder explained, the call centre is unhappy about how much medication I seem to miss. Cue upset from me, a long discussion, and trying to find yet more strategies to help me cope with another problem. Lovely of said key holder/friend to intervene though. Went to bed thoroughly exhausted, however, this was the kind of start to the week that impacts on the rest of it…

The rest of this week has just flown. Tuesday was a hospital appointment, plus a blood screening, and a sleep in my wheelchair in the afternoon, and evening. I knew Wednesday would be no different. Each of the first three days of this week have been ‘busy days for me. Almost more than I can cope with. Together, absolutely more than I can cope with. Just one of those days in a week can be enough for me! Wednesday was an early care call, after which I tried and failed to get some writing done before I went to my friend’s house for the fortnightly Women’s group. A quick lunch, and a meeting with a district nurse (DN) manager, the Community Stoma Nurse, my Joint Care Manager (the NHS version of a social worker), and  Carer C, with a lot of verbal input from me. If I was exhausted before, I had absolutely no energy now! A curry, a rest, and I trundled off to lead the prayer meeting, sounding surprisingly awake. However, all of this effort also involves what is called “Payback Fatigue”. I suffer a lot of this. The more I can pace my week, doing things at a slower, equal pace, and in an organised way, the better. However, this is something I am still learning to do, and is by no means the whole solution. By today then, I was floundering. I woke up with my stoma bag having burst, and went back to bed after Carer C helped me complete my morning routine. I woke only to see the nurse, and fell asleep again. Having woke up when Carer C arrived to do the sit/Pa time, we decided I had enough energy to go to the gym. Make no mistake, I am no fitness fanatic. I can manage a couple of machines, and a few specialist machines which help with gentle stretching of sore muscles. This was enough to send me off to sleep again. So frustrating. So much sleep, from so little activity!

So, what about the rest of the week?!

I wrote half this blog before sleep, and half afterwards. I fear that after reading this, I will have put most of my readership to sleep! I have written it to try to illustrate some of the frustrations and complications, as well as some of the lessons that come with living from long-term chronic illness and serious physical disability. I feel there is a lot of ignorance in general among the government, as well as the public as to the everyday realities of living with such things, to say nothing of the economic consequences. I hope to get some more constructive things accomplished in the next few days, but only time will tell…

Another “must” watch…

One man, one disaease, one enormous challenge…

The following video is from   the BBC IPlayer. It is the hour-long episode of “The One Show from last night (Weds 17/10/12, 7pm). The first segment concentrates on a young man, called Alex Flynn. I think he’s 33, who has Parkinson’s Disease but it determined to bash the diagnosis to bits, for now to raise money and awareness. To do this, he took on an EPIC challenge in the USA. I don’t know what I would call his effort, as different words have different connotations. If you are interested in the language debate that surrounds disability and impairment, check out the post I wrote during the Paralympics, and the acticle I based my post on. . You may well find your own word to describe what Alex has achieved. When you find your own word to describe it, post it below, or in my Facebook group for the blog. ! It would be interesting to start a discussion. If just want to watch Alex undertaking his challenge, rather than the full programmer, it start at 2 minutes 50 seconds   and ends at 12 minutes .

‘Children in Need 2012’

p.s. You may be interested to know that The  Rickshaw Challenge in Aid of Children in Need is back! This year features a team of young people who range in age from 16 to 18. One young man is a ‘young carer’, another has Cerebral Palsy, and a young lady from Stirling in Central Scotland has a brain injury. If you’d like to find out more, this part of the programme starts at 43  minutes and ends at 46.20  minutes. You can watch “The One show by following the link at the beginning of this article.

Inside Out’ (Yorks/Links) 15/10/12




This post focuses on issues discussed on InsideOut (yorks & Links) If you’d like to watch the programme, click here

Who’s going to pay for care when we get old?

This is an issue I’ve covered before, especially from a personal perspective. It’s not just old people who need care, all sorts of people do, myself included. (If you’d like to read some of my experiences, follow this link.)  However, this Monday, InsideOut didn’t mention this even in passing but chose to concentrate on Older people’s mental health, and alternative provision of care. I wasn’t surprised to learn that 1 in 4 older people suffer from depression. These numbers will rise in the coming years due to the impact of financial worries and poorer health, people live longer, and so acquire more health problems. A woman called Christine Cook who suffers from depression says, “I don’t know who I am”.  She talked of losing your identity once you retire. It’s the same for people who can’t work as it is hard to carve out a life in between hospital appointments, fatigue, medication regimes, and so on. These comparisons were not made in the program, so I felt an opportunity was lost. Christine continued by saying that the things she struggles with most is loneliness, money worries and health issues — welcome to my life, too!

The combination of physical disease occurring from old age and mental health difficulties makes it hard to diagnose anxiety and depression because both can have similar physical symptoms. It’s an unknown problem which has been little understood until recent years. Other issues are things like loss of physical function. None of this is news to me, like having to find things to do with your days, or it makes you feel worse. Finding your own solutions was mentioned as well… but I’ve had to do that too, to a certain extent. Not belittling anything their case study person has been through, but none of it sounds like rockets science to me. Time will tell what kind of co-odinated approach comes out of the research and trials covered in the program.

Who will care, and who will pay?

Hartrigg Oaks is an example of care, but not as it’s been done before — a new kind of partnership which takes away responsibility from the state, but the state is hardly facing up to the challenges anyway. The community is a mixture of older people, and younger, older people! The younger people help with maintaining the gardens, and I think, doing some of the care of those who can’t manage any longer, and in so doing earn points which build up and may be used to ‘pay’ for care if and when their health deteriorates. Again it wouldn’t work for everyone, but is worth watching.

Care is a Political minefield, in terms of paying for it, according to David Blunkett. Paying for care without public money is an interesting idea, and the program covered a couple of possible options– home-shares, something called share and care. Iona, and Graham live in Iona’s home. Graham lives rent free, but gives some care, about 10 hours a week looking after the garden, doing the shopping and so forth. Neat idea!! The journalist admits it wouldn’t work for everyone, partly cos there needs to be a specific kind of bond there but it seems to work great for them! Something so niche seems to solve the problem for some people but if it’s not solving care issues for more than just a few there has to be other alternatives.

Blunkett’s talked about Partnership and joined up working; care ring and all those things… these things may sound like gobbledygook for you, but I’m thinking, why is this just focusing on elderly care? The ‘care’ crisis affects many others. CUTS — in rhetoric at least means care has to come from elsewhere but InsideOut’s research shows some interesting solutions. I look forward to seeing what will happen in the long-term but there has to be a cost-effective way of caring for more people otherwise schemes will only reach a select few and the government will end up paying for care anyway. Not even they know how they will pay for it … surely time is running out?

A Word of Encouragement (2)

Kickstart Sunday… and the week, with the right perspective!

Most Sunday, at the church I go to, we have a Bible study and discussion group called ‘Kickstart Sunday’. This is an informal look at a given bible passage, aided by coffee and cake! Yesterday, we looked at Psalm 103, and the person leading encouraged up to Praise the Lord Jesus, no matter how we were feeling, because praising and worshiping God is a requirement for those of us who consider ourselves believers, no matter what our circumstances. It is an active decision to do this, and is not just for Sundays, but,t well, for life! If you are reading this, I want to encourage you to Praise Him today, and every day, no matter what! This particular version of the psalm is from the Common English Bible (CEB), and I rather like the wording.


Of David.
103 Let my whole being[a] bless the Lord!
Let everything inside me bless his holy name!
2 Let my whole being bless the Lord
and never forget all his good deeds:
3 how God forgives all your sins,
heals all your sickness,
4 saves your life from the pit,
crowns you with faithful love and compassion,
5 and satisfies you with plenty of good things
so that your youth is made fresh like an eagle’s.

6 The Lord works righteousness;
does justice for all who are oppressed.
7 God made his ways known to Moses;
made his deeds known to the Israelites.
8 The Lord is compassionate and merciful,
very patient, and full of faithful love.
9 God won’t always play the judge;
he won’t be angry forever.
10 He doesn’t deal with us according to our sin
or repay us according to our wrongdoing,
11 because as high as heaven is above the earth,
that’s how large God’s faithful love is for those who honor him.
12 As far as east is from west—
that’s how far God has removed our sin from us.
13 Like a parent feels compassion for their children—
that’s how the Lord feels compassion for those who honor him.
14 Because God knows how we’re made,
God remembers we’re just dust.

15 The days of a human life are like grass:
they bloom like a wildflower;
16 but when the wind blows through it, it’s gone;
even the ground where it stood doesn’t remember it.
17 But the Lord’s faithful love is from forever ago to forever from now
for those who honor him.
And God’s righteousness reaches to the grandchildren
18 of those who keep his covenant
and remember to keep his commands.
19 The Lord has established his throne in heaven,
and his kingdom rules over all.

20 You divine messengers,
bless the Lord!
You who are mighty in power and keep his word,
who obey everything he says,
bless him!
21 All you heavenly forces,
bless the Lord!
All you who serve him and do his will,
bless him!
22 All God’s creatures,
bless the Lord!
Everywhere, throughout his kingdom,
let my whole being
bless the Lord!


Dear Father God, may we truly worship you today, no matter what! In Jesus name, Amen.

GPs must treat foreigners under new guidelines | Mail Online

I first saw the following headline as I passed the Newspaper display in my local supermarket, and halted my chair in shock! The following is from the Daily Mail, on the 13/10/12. Click the following link to read the article: GPs must treat foreigners under new guidelines | Mail Online.

I have no doubt we will hear much story in the coming days, from every possible angle. However, as someone with a long-term illness and a long-term disability, I am astounded that such a decision could be reached while leaving common sense at the door. For m, this one is the latest in a list of CRAZY decisions about the NHS… and we have to take action while we can. Id love to know what you all think of this decision.