Caring for people with learning disabilities when they are sick

I am an adult nurse who started their training in 1980. We received education and training across many spheres of nursing practice, but nothing specifically about the specific needs of people with learning disabilities. I worked in a long stay mental health facility for 8 weeks during my training, people with severe mental illness were mixed together with people who had learning disabilities and some people who probably started off with little in the way of an illness of any kind. As general nursing students we were able to offer some more general nursing care, after all everyone develops physical illness. The first time I encountered patients who were learning disabled was when I was a District Nurse. I had little knowledge of their specific needs and learned most about their conditions from their carers (family members and care home staff). What I did know was that I needed to offer care, compassion and time. I needed to give time and to listen and to use my instincts. I didn’t assume someone with a learning disability had no feelings, could not experience pain or that I knew best. My knowledge looking back was woeful, but to the best of my knowledge no one came to serious harm or died because of me.

Over the last decade or more, nurse training in the UK has been split into different areas of care – adult, children, mental health and learning disabilities. In the main nurses remain within their sphere of practice, despite the obvious cross over between disciplines. My own training failed to prepare me to care for many people I have encountered along the way, but there are ample opportunities to learn along the way. There can be compassion and there can be kindness. Yet again today I am ashamed and embarrassed by a report that suggests that nursing care in this country isn’t all it is cracked up to be. But I refuse to believe it has to be like this!

That age old rivalry

People often say that there are two groups of people, those that do it and those that write about it (and often teach it too). Sometimes in any given subject those two worlds meet, neigh collide. My dissertation last year was about evaluating an action learning programme, so as someone who does it, facilitates is and also has written about it (though hasn’t been published as yet) I guess that causes me to slightly straddle these two worlds. It would be true to say that I am slightly sad, given that I was more than a little bit excited about the prospect of meeting some of the people I have quoted in my dissertation and in other academic papers but I was and I did. Yesterday I returned from an intensive 3 days at the Henley Management college where the first ever International Action Learning Conference was held. Henley is a great place for a conference, it is right by the river Thames in a beautiful part of Oxfordshire and the College itself provides a range of older and newish buildings within some great grounds. From my bedroom window I could see the ducks being dragged up the thames by a strong current and young men in boats getting in some rowing practice in the opposite direction.

The conference itself was a mixture of slightly confusing academia, not always fully understood by the other academics in the room or indeed themselves at times and people’s accounts of the practice of action learning within various areas of the world including Bosnia, Wales and the USA to name but 3. As always, I left with a few more questions than answers and not all of those were about what I heard. Where did that man get the jacket that looked like it had been converted from a rug, why do some men where sandals without socks in March, and why do some people act like they have never seen wine just because they are not paying to drink it at the time? I also wonder why rather than create this them and us attitude they don’t work out how practitioners could help academics make themselves better understood and how practitioners could add a bit of theory into their practical ideas, or is that too simple?

So what about the men of my essays? Mike Pedler, John Burgoyne and Joe Raelin? Well it was great to know that they were pretty ordinary men who were able to speak in a way I could actually understand. It was great that they are prepared to challenge the assertions made by others and to give the impression that they don’t know it all yet. It was also interesting to note that some published academics still fall down at the same places as other less esteemed people. 45 powerpoint slides should never be shown to any audience in one showing, much less in a short lecture meant to be about 20 minutes and then followed by discussion and questions.

More telling on my return was that my family don’t know how to unload the dishwasher much less fill it again. They just washed up their dinner plates but nothing else. The kitchen (and teen son’s bedroom) was cluttered with plates, dishes and cups. They were apologetic but I get the impression not sorry. They obviously don’t want me to try leaving them for longer than 2 nights since they would never cope. I think they need some training on this matter but I fear I might have left it too late to start!

Keeping the status quo?

It is a year, pretty much to the day since I started my current job and to be honest I have found it a challenge to learn a whole new area of knowledge, get to know new people and to earn myself some credibility in the field of women and children. Many times I have wondered what I am doing spending my time learning about how maternity and children’s services should be commissioned. I have questioned the need for me to act as some kind of administrative support to the local maternity services liaison committees, or as the target of the wrath of paediatricians or GPs who want to apparently blame me for the perceived ills of the PCT. I have wondered why it is that our maternity services couldn’t have been held up as some kind of perfection by the healthcare commission rather than ‘most weak’, and why everyone can’t just get on nicely with each other rather than trying to score points off of each other.A few weeks ago what I have always considered pretty much my dream job was advertised, one which would allow me to return to the arena of the district nurse, my first love and one that would get me back into managing people, something I also enjoy. So when the postman brought me news of an interview at the weekend why wasn’t I jumping for joy. Why instead was I filled with foreboding at the idea of actually performing well at the interview and being offered the job. I can’t quite put my finger on it, but something just feels wrong. I have spent much of the last 4 days considering things and I have realised that I have unfinished business here. I still have lots to learn, I still have work to do with the two new heads of midwifery locally, and with our other providers. I still have work to do in learning how to be a commissioner, in performance managing the services, in getting paediatricians to work together, in getting GPs to recognise the importance of our local maternity and children’s services.

Tomorrow I am going to tell HR that I am withdrawing my application. I hope I have made the right decision, and that the very fact that I have spent 4 days thinking like this means that I have. Only time will tell.

The picture above is the real Status Quo, i.e. Rick Parfitt and Francis Rossi, kings of 2 chords or whatever it is. I have seen them live when they were on with Queen in 1984 at Knebworth. So there you have it!

What goes around comes around

 

The person who decided I wasn’t good enough for my own job is leaving. apparently she has lost confidence in those around her (you can make of that what you will) and the person who got the job has taken to slagging me off while looking like she has stopped sleeping. Meanwhile I am getting feedback about the quality of my work from the CEO.

It is about 11 months since I started this job in the alien world of children, maternity and whats more commissioning rather than providing. It hasn’t been easy. I am an adult nurse by trade, I know much more about leg ulcers and ladults with long term conditions than antenatal and neonatal blood spot screening or children’s urgent care. I have constantly questioned what I am doing and whether I shouldn’t be doing it elsewhere. I have wondered if I shouldn’t just have hung around in education waiting for my time to ‘come again’.

It has not been until the last couple of weeks that I have actually begun to feel that I belong. That I understand this stuff, that I can speak without thinking quite so hard. Even though all along I knew deep inside that it was the right thing, that this is great experience and I have great people to work with I have questioned my right to be here, and whether I should want to be here. Finally I can say; yes I do. So long as my resubmitted job description gets me off of protected pay. Other wise no matter how much I love my job it won’t be worth what the PCT want to pay me. Take note Mrs CEO!

Intellectual property

In the two years before the NHS reorganisations that caused me to change my job I wrote, alongside a few colleagues, a number of policies, guidelines and other papers which at the time appeared as if they would end up on a dusty shelf, or worse in the shredding bin. But no, yesterday I read a new policy which has its roots in something I wrote before and what is more contains references to other papers including my dissertation. The latter belongs to me, it was essentially written in my own name, it was written by me and most of the time spent writing it was my own time rather than my employers (the same cannot be said for my reflective practice journal which was completely compiled during an afternoon in May this year at my desk and the one next door!) But all of the documents I poured over for hours and which are now being taken by the new organisation do not actually belong to me. As employers they retain intellectual copyright and can do with them what they might wish. One of the things I find most interesting is that at the dawn of the formation of the new PCTs my work and my ideas were not deemed valuable, instead they decided that a person better equipped to ticking boxes would be preferable to run the show. Now though a new softer edge is needed so out come the ideas a group of us had about providing better support for our clinical staff, for implementing programmes of induction and performance management. They say that what goes around comes around, but it has barely been a year and boy that is even faster than I had imagined.

My teenage son has just begun his literary career. He has moved from the fact driven basis of education as it is taught up to the age of 16 and entered the world of A levels where analysis, opinion and fantasy appears rife.  He proudly told me as I drove him to school this morning, that he had created an A4 page from just one quote from the Tempest. The ability to be creative in this way is a skill that needs to be nurtured both for his future educational career but also for the world of work. It might not be right and proper, but it is a hard and sad fact of life that the ability to write pages and pages from nothing will often get you far in the world of work. Whether you have the right to reproduce such stuff elsewhere or not, it means that even after the person has been discarded their words live on.

Don’t leave it to the last minute

Sound advice, but of course I did. Post dissertation relief was followed by the realisation that I was meant to submit a reflective practice portfolio which represents my learning and reflections over the last almost two years. The trouble was I was all ‘essayed out’, I couldn’t make myself be bothered and at the weekend I even found that housework was a desirable alternative to delivering the work on this one. So on monday I set about writing a short academic piece which is meant to underpin my portfolio and frankly what I have written is complete rubbish. Trouble is I just can’t make myself do any better. As for the reflections, well thank heavens for this blog. I was pleasantly surprised that I have at times ranted, and described in detail the minutiae of my essay writing, university attendances and so on and therefore with some embellishments that bit doesn’t look too bad. Is it good enough to pass? Well if I fail on that it will be a travesty!

So I head off for the last 3 days of  my course, the decision making process will take place today and tomorrow which determines if we are masterly. Of course I am and in a number of things, but whether that includes Strategic Leadership, who knows? The course has been interesting, I have learned a lot, but whether it is truly valuable to my daily life well only time will tell. I am glad I did this over an MBA, I am glad I did it in this kind of free and easy style though a bit more structure and support from the tutors wouldn’t have gone amiss.

Tomorrow I am going to college by train, this is so that I can enjoy a glass or two of something cold and white without worrying about the need to drive home. It is the end of the course and more than anything, when (if) I know I have passed I will just be relieved. No more academia for me, there is no way on earth you will see me heading down PhD alley!

For some strange reason

I a, finding blog topics hard to come by at the moment. Not sure why this is, or if it is related to my general fatigue with writing, or just plain laziness on my part! My new job involves making sure the PCT is buying the most appropriate services for children (also includes maternity services) and this is involving me spending a lot of time reading, meeting with people to discuss stuff and generally absorbing information. That in itself is tiring, and I guess contributes to the lack of blog posts. The other problem I guess, is that I don’t yet have the confidence in what I am saying on such topics to feel that I should put pen to paper (or text to blog) about them. There is plenty of cynicism about the kinds of people who work in the PCT and the experience of going through the CPLNHS process has been scarring to say the least. So much so that I am not in the mood to antagonise those who might find stuff that I say a little shall we say controversial.

I have one last piece of work to do for my Masters course, which is my reflective practice portfolio. I need to go back to the personal development plan I drew up at the beginning (nearly 2 years ago now) and think about what has happened, what I have learned and what has changed. I also need to write something academic about the process of reflection and being refexive. Then next week the course ends and I am free to get on with life, work and think about my holiday which is coming up in a month. Maybe I am just weary.

So for those of you who pop by relatively frequently, I am sorry that this blog has been a little dull lately. Once I find a way to snap myself out of it, I’ll resume normal posting. Until then, well I am erratic to say the least!

Post dissertation break

I didn’t realise I would feel quite so exhausted and particularly word weary after submitting my dissertation. But I just couldn’t really think of anything worth blogging about and I am not sure I can yet either. I also needed to get on with having a bit of a life, and this weekend has been a little on the busy side. Usual things (shopping and ironing) plus driving hubby around the country (he went to the Derby on Saturday), attending barbecue parties (on my own due to hubby favouring horse racing over partying with my friends) and visiting my parents. All dull stuff, but equally things I have not really had the time for recently.

I am a bit worried that I didn’t put any kind of reflective analysis at the end of my dissertation like I think I was meant to and thought about this over the weekend. I have decided that I will put it into my reflective portfolio instead and they can like it. I have also arrived at the thought that the reason I felt unable to go there was that I was just pretty exhausted, I had nothing left to say on thursday before I submitted. I am also left with that so what feeling, is having a masters going to do anything to me, will my life be different? Will I find that new wonderful job? (Not that there is anything wrong with the one I currently have).

So this week is starting with a bit of fun. No work for me today, I am off for a spa day with a couple of friends. Hopefully that will give  me something quite fun to write about later on or tomorrow. Watch this space!

Unusually cold for the time of year

So the BBC weather man tells me as I am typing this, So much for global warming. Don’t get me wrong I know this is an important environmental issues but it is on days like this, when I have my central heating blasting out on 29th May that my cynical side emerges. The good thing about the wash out of a bank holiday has been that I have made enormous progress on the dissertation and for the first time I actually believe it will be done by Friday. I now have a few changes to make to my data analysis section, then have the limitations and conclusions to write up and that will pretty much be it. I have so far written more than 17,000 words and that in itself seems like something of an achievement and having read it all today even if I say so myself it isn’t too bad at all.

The end of all this couldn’t come sooner, as my job is starting to get busy and I really need to be able to concentrate on it. Isn’t it just typical that just when I start a job where commissioning maternity services is part of my role, then hey presto it rises to the top of the health care agenda. This means that it is an exciting time, because I hope it means that a service that has been terribly neglected for a long time will at last receive more investment. But only if we work closely with our providers to make sure that is what happens. The birth rate in our local area is increasing, but we are working against non clinical managers who think that demand could be better managed! That is why, and I know it is controversial, there should be ex clinicians working in managerial roles in health care.

With just my reflective practice module to complete (once the dissertation is put to bed) I have just about 6 weeks to go before my holiday and I have to be honest and admit I am feeling a bit on the weary side. But when you consider the job uncertainties that occurred at the beginning of the new year, the new job I started in March and now finishing off my MSc I am not surprised. A pleasant offer at the weekend, my in laws want to treat us to a cruise later in the year, so things just get better!

A week to go

Until my dissertation is due in and I am struggling with it all. I have only written about 700 words since the weekend, and I am struggling to put one word in front of the other. I intend to work hard on it over the weekend, and at 11,700 words am making reasonable progress but it would be fair to say that I could have worked harder. Doing a masters course at the same time as working full time is no mean feat, but I find that I struggle to be motivated after work to get down to the books and actually writing stuff.

To keep me going I am now thinking of all the things that I will be able to do when I no longer have to read books about leadership and action learning and when I no longer have to write about methodologies and data analysis. So here follows a list of things that both need to be done and can be done after Friday 1st.

1.  Housework – I have had the dyson out this evening, but all cleaning in the last few weeks has been superficial, I don’t want to do housework but it will have to be done and done thoroughly.
2. Buy and read a newspaper without feeling guilty. I usually only buy them at the weekend, but there is nothing better than curling up on the sofa with the newspaper on a sunday afternoon (well maybe there might be but you can’t have everything)
3. Read a book that hasn’t been sourced from the university library or bought from the reference book section of amazon. I want to read novels, nothing too deep and meaningful, but a novel just the same.
4. Go out for the day at the weekend, visit places and people without thinking that I should be at home doing something more important.
5. Get stuck into my new job and read about the things that go with it without thinking about the other reading I need to do for my dissertation.

So just a week and between 4 and 9, 000 words to go. I for see a heavy weekend, but I do see the light at the end of the tunnel! Photo from here

The tale of two systems

Both have been about applying for jobs, about an attempt to make fundamental changes to the way in which things are done in the NHS. One, is about medical careers and an ill thought out online job application process for junior doctors and the other is an ill thought out reorganisation in primary care trusts which involved more senior managers. While the broad agenda of Modernising Medical Careers will no doubt continue, the application debacle was pulled and not before time. I am no expert on this matter, but I have watched the whole sorry affair unfold in the press, on various news programmes and for the most part on the many medical blogs which have covered it both from a personal point of view and from disbelieving but angry senior doctors who have campaigned for the process to be abandoned. some of the people involved in all this, even if they manage to secure the jobs they want will be suffering from the effects of this for some time.

Commissioning a Patient Led NHS on the other hand has not been well publicised. Who after all cares about the reorganisation of the PCTs, and of the resulting potential job losses to managers. It involved online applications for the most senior people, interviews and then the lucky people starting their new jobs. But it has meant others have spent the last 18 months not knowing what they would be doing after 30th June 2007 and I am sorry to say that some people still don’t know. Some like me have had to start what is almost a new career on a lower pay band (all be it on protected pay for a period of time), others may have to accept the first job that comes along and others may in the end be made redundant. Even those who have jobs (like me) feel damaged by the experience, confidence dented, career in a bit of a strange place. Other colleagues who have no job may well never recover from this whole mess, they have been mucked about, ill advised and told by the union (Royal college of nursing) that there is really nothing that can be done.

I wonder what it is about our professional organisations that means they appear no longer to represent those who pay for them to exist. Ok so I am not your average nurse anymore, but I still pay up my subscription each month as do many other nurses who are now managers. It would be nice to know that they are out there supporting us, but then if the BMA can’t do the right thing for junior doctors I think I am barking up the wrong tree!

Another blogger outed

It was with great sadness and a sense of irritation on her behalf, that I discovered yesterday that the Fat Doctor blog is no more. Some wicked person had found it, printed the whole thing out and shown it to her boss, now that is below the belt. For those of us who blog about work, and in particular those of us who have professional responsibilities to uphold we are always in a precarious position. Fat Doctor provided us with some wonderful insights into her life, yes her work life but also about her home and family life, her childcare arrangements and of course her illness. I know that those of us who read her recently will miss her and hope she will be back very soon.

The thought of being discovered and outed is on my mind a lot now, so I am becoming increasingly worried about blogging about work per say unless I am talking about things personal to just me or so general as to not really matter. It does tend to cause your creativity to suffer though. Why am I worried? Well I am now doing a job which is specific and only I do for the whole county. If anyone who knew me well were to find this blog it would take them just a few minutes to discover it was me and while I don’t think I have broken any codes of confidentiality, professional practice or indeed moral responsibilities to my employer it is still a consideration. Hopefully I don’t know anyone quite as mean as the person in Fat Doctor’s office, but you never know.

On a more positive note though, at the start of my course I started categories entitled reflective practice and post graduate, the entries to which I will soon be using as the basis for my reflective practice portfolio to be submitted at the end of my course later in June. I am really what might be described as a last minute person, and that is why it is a stroke of luck, because everything else that might go into it is actually stored in a pile of papers on the spare bed! On another positive note, my dissertation is now 8600 words and I am ready to move on to my methods and findings. I can now take back to the library all the books on philosophy that made me look clever but which are pretty hard to read.

What has happened to Fat Doctor and others will not put me off blogging, but I intend to be careful. Mind you we have a summer of teenager antics to come yet as he is in the midst of exams right now but then will have a very long summer to get into mischief, plus there will be his prom to post pictures of. Maybe this blog could be renamed…….. or maybe not, I work in the NHS and I am going to write about it!

Progress

I am feeling the need to share the small, but perhaps significant lightbulb situations that have occured in my head in the last couple of days in relation to my dissertation. Something is happening in my head, there has been a link made between the theory of the impressive looking but complex text books I am being forced to study and real life. Some understanding of it all is happened, and I cannot tell you what a relief that is to me. Who would have believed that someone who spelt the word psychology wrong in her first essay as a nursing student (well it was hand written and lets face it, it is a difficult word to spell) can now not only spell the words philosophy and phenomenology but is at last being able to grasp (in simple terms of course) some kind of meaning. What is more this is being linked to my topic – action learning.

Action learning, for those of you who who haven’t experienced it, is a process where a group of real people spend time looking at and discussing each others real problems. Rather than advise each other on what to do, based on their own prior experiences, they use a questioning process to begin to unpick the root of the problem. Done well, with the right people it is a really good way of learning for your practice, and whats more it helps you to see that problems and situations at work often occur time and again.

My reading about action learning gave me the idea that I needed to explore it from a phenomenological position, that is to cut something complex to the bear bones, from the point of view of no preconceptions, from the point of the view of those doing it and recognising that it is unique to that person. Trouble is, in these kinds of things you can’t write 10 words, you need to write many thousands and to do that you have to go into the kind of detail you would rather not. But hey isn’t that half the fun I hear you cry? Well no not really, but it has to be done and doing it I am, Iove even created a new category. Normal service will be resumed soon!

You know its going to be a good day when….

You pop into the supermarket and trip over in the meat aisle, your provisions scattered about you. The only good thing about this event was that it being 8am there were few people around. I was sure the floor must have been wet or something, but no. Obviously I’ll have to get more sensible shoes!

The writing of the dissertation is becoming painful. I just don’t seem to be able to write what needs to be written. I have notes, lots of notes, I have books, articles, I have stuff in my head, but can I make it appear on the computer screen in any useful order, can I make it read in a masterly way? Can I heck! The research itself is fine, the plans look pretty fine, but it just won’t flow. Usually when I write anything I start at the beginning and keep going until 5000 words or so later the conclusion is written and hey presto. This time I felt that perhaps the introduction chapter should perhaps be written later so started on the literature review which did seem to be reading ok till I looked at it yesterday. Now I have started the methodology chapter and am using big words like epistemology and phenomenology and the like to make myself look clever, but it just isn’t coming together. Now, with ankle throbbing slightly I should be taking the opportunity of a later start at work to get on with it, but no here I am blogging.

As I said to someone at work yesterday, if anyone hears me say that I want to do more study then utter the word DISSERTATION to me and I will come to my senses immediately. For now though I have 30 days to write about 17,000 words and it is time to get on with it. So on with it I will get, now, honestly, I promise…..

Picture obtained from this blog

Living and learning

This post is intended to give myself a good talking to. The end of my MSc in Strategic Leadership is in sight, and I am currently busy interviewing people as part of the data collection process. But am I working as hard as I can to write up the literature review, methodology and methods? No I am not? What am I doing instead? Well anything but working on my dissertation. You would imagine that my house would be spotless in that case wouldn’t you? Well I don’t appear to have been scrubbing floors or dusting the corners, so I haven’t suddenly become house proud. I have done quite a bit of weeding my garden as we have been having some very nice weather lately and I have also been out walking through the local countryside. Other than that, I am ashamed to say I don’t really have an excuse for my poor work rate. I have written about 2000 words of 20000 and if I am going to have anything half decent to present in June then I really must get on with it. Each time I decide to do a bit of blogging instead of writing or reading then I will do well to look at this post and remind myself to get on with it!

Yesterday I went off with a couple of colleagues to look around what was described as an integrated emergency / urgent care facility run jointly between the acute and primary care trust. For patients, and indeed for the visitor it all looks very nice, and people are getting really very good care and on the ground the nurses and doctors, who work for both sectors but work together are doing this in a pretty much seamless looking way. Underneath though there are still problems. For example the PCT still gets charged for the patients attendance, even though they could see a nurse employed by the PCT. Payment by results could end up being the biggest wedge between acute and primary care, after all why wouldn’t the acute trust want to continue to see patients if they are getting paid for each person who walks through their doors. In our own area the barrier to developing any kind of integrated facility is the relationship between the two sectors and the ensuing arguments are likely to have an effect ultimately on the care a patient receives. It was amazing to see GPs who work for the out of hours service working in the A&E environment and actually seeing patients who walk in to the urgent care facility, helping with the education of the nurses there particularly in the area of minor illness and also learning more about the treatment of minor injury in the process. I just hope the different cultures of primary care and secondary care can come together in the longer term or else this could end up being another one of those expensive projects that is begun and never carried through to its full outcomes. One of my main concerns with this whole thing though is the continued use of management / business consultants. I know it is easier to hand a project to a person or group of people to see through, but can you tell me why a) we don’t have the expertise in house, or if we don’t why we can’t create it, because this is a massive and surely unnecessary cost to the NHS!