I noticed from some trailers on the TV that next week (and the week after), BBC2 is airing ‘Living With Alzheimer’s’. It will be broadcast in two parts on February 4 and 11.
The BBC mini-site includes an interview by Terry with Prof Sir Michael Rawlings from NICE.
Apparently one of the things he will do is to trial an infra-red helmet that researchers say may improve cognition for people with dementia. The Alzheimer’s Society have released a statement particularly relating to this
‘We welcome any new initiatives to help fight dementia, but the infra-red helmet is still at an early stage of research. We need a proper clinical trial to determine whether or not it is a safe and effective treatment for people with dementia.
‘700,000 people are living with dementia and one million people will develop the condition in the next ten years. Many would try anything to stop this devastating condition robbing them of their lives. It is vital that we do not generate false hope and that all potential treatments are rigorously tested.’
False hopes are indeed, not a Good Thing – but I have to say I’m intrigued by the idea and have made a note to remember to watch the programmes.
And I am grateful that Terry is so open about his Alzheimer’s and by sharing his experiences he is and has been able to break down a lot of preconceptions about the disease.
I’m writing this in the middle of the night. I know we are told not to take work home with us. And for the most part, I’m pretty good at that. Currently though, the reason for my wakefulness is concern about a particular individual or rather, a couple.
I have had this happen before and was thinking about some of the things I can do to work through it.
Usually when I leave the office at the end of the day, I think ‘What else could I do that would make things better/easier?’ It isn’t about finding solutions immediately more about looking at the whole picture and distinguishing ‘things I can change’ from ‘things I can’t change’. We can’t oblige people to make certain decisions – except we can – in some rare circumstances.
The situation in the particular case is one that is very unusual and doesn’t come up too often but without any of the more dramatic details, it has come about because the carer and the patient have very different interests and what is acceptable in one case is completely unacceptable in the other. And vice versa. Of the the primary concern lies with the patient himself and that is the way the decision-making has gone, it has left another person in distress as a direct result.
I have sought advice from managers, doctors (Consultant and GP) and up through the service to Assistant Directors (who, incidentally, had to seek advice himself on this one!) so I know it isn’t a decision or a situation that I have made in isolation. The fact that different people have disagreed with each other is notwithstanding because I have, at least, sought the support and experience of others to reach the point we are at. I know this logically but there is an illogical and emotional tug that is nagging.
And for all the procedures and advice and legal manoeuvrings there is a basic instinct to want to ‘make things better’ ‘ease discomfort which exists’ that is gnawing away at me.
I am far better at leaving work at work and protecting ‘home time’ than I used to be in general though. I think it is partly something that comes with practice and experience and partly a part of how we are made in the first place. It is definitely the one distinction between people who are subjected to fast burn out as opposed to those that can continue to work in the profession. But sometimes there are thoughts you can’t leave so easily at home.
But I think, or at least with me, however well I think I have been managing, a situation might pop up very rarely will keep me pondering a long time.
A bit cryptic I know.
Mental note to discuss this situation further when I do get to work..
Yesterday the make up of the shiny new government Task Force on Social Work was announced. This is a focus group who are to be involved in the ‘root and branch’ review of front-line practice of the Social Work profession as a whole in the UK.
The ‘team’ has been put together by the Secretary of State for Children, Schools and Families – Ed Balls and the Secretary of State for Health, Alan Johnson and are due to report back to the government this summer.
That doesn’t leave them a lot of time. Of course, I am sure there can be a million different views about the rightness or wrongness of the composition of this committee. Social Work runs across childrens’ and adult services. Social Work covers a wide gamut of interests and experiences. It is difficult for a committee which is small enough to function effectively to be large enough to address the differing aspects of the profession so the hope is that those groups not having a place specifically on the task force will be considered and represented by those who do have a voice.
The task force (I don’t know, that just brings back memories of the Falklands Invasion to me) has the usual members, some front line workers, some academics, some chief executives – but there is one member whose presence really is staggering.
Deirdre Sanders, the agony aunt of The Sun – remember, the same tabloid newspaper that carried out a vitriolic witch-hunt against individual social workers and organised a petition against them – has a place on this Task Force.
I’m sure Deirdre is a wonderful human being. She writes very sensible letters in the newspaper (so I’m told). Am I the only one to be staggered that the social work profession has to engage journalists to discuss the future of their profession though at this level? Sure, if it were a task force on the ‘perception of social work’ or ‘improving the way that social work is reported’ she would be a valuable member of the team – but honestly, a committee which is tasked with making changes to the social work profession?
It feels a bit like Ed Balls playing (again) a public opinion game with a profession that has had too much political interference for its own good.
Emma Maier considered this at The Social Work Blog and looks at both the positives of Deirdre’s appointment, namely that
giving The Sun the inside track on the taskforce could be a clever because it is always more difficult to slate something you are involved in. Having the popular press on side would help convey some of the important messages to come out of the taskforce. And the rest of the taskforce seems to offer a good spread of stakeholders from children’s and adults’ services.
It is something I hadn’t considered initially but then, why should a team of professionals who are conducting a serious review of the needs of social work in the 21st century have to get ‘popular press’ onside. Why should we, as social workers, need to work hard to involve tabloid journalists in our professional goals and developments. We should look at how social workers can work most effectively and beneficially for the public good and for the individual users of services rather than pandering to public agendas created by popular journalism.
Can we imagine a task force of any other professional group involving an ‘agony aunt’? OK, excepting a task force of journalists.. I guess that would work.. User involvement is represented quite rightly on the task force so why appoint a paid employee of the Sun newspaper. Will her presence, as I’m sure she is extremely articulate and able, overpower and detract from the serious discussions that need to take place about social work. Is this a true and honest attempt to improve and create a fundamentally workable system or is it a publicity stunt by Ed Balls. Again. Who seems to like using social workers are political footballs.
As for me, I feel honestly, insulted that my profession cannot be given the respect should command by the government.
I await the report in the summer with interest and no little trepidation.
The Guardian has an article today explaining about how Haringey, in the fallout from the failing Child Protection services, issued an email to every other London Borough, asking for ‘one good quality person’ (namely a social worker) from each of them to help ease the backlog of assessments.
The article reports that they didn’t get much joy – possibly because all of the other boroughs are under a similar amount of pressure. A proposal for other boroughs to freeze referrals to Haringey is being considered.
I pondered about the nature of agencies assisting and helping each other on a more informal basis. I wonder if there is much scope for professionals at a front line level rather than at directorate level, to move between employing authorities to ‘share good practice’.
Coming in from the outside can be a good way of identifying poor practice and if an outsider were able to produce a report, it might make internal staff more likely to speak informally rather than producing a top level down report where there is more fear of ‘whistleblowing’ and the implications.
The only situation I can think of where I have been involved in a ‘pan London’ approach was when I was involved in the aftermath of the 7th July bombings in London where a response was coordinated with different boroughs providing members of staff to ‘man’ the Family Assistance Centre in Central London. Some of the discussions we had about the different ways of working and planning were priceless to me and I took some ideas back to my workplace.
I know every agency is pushed for staff but a wider issue is that in London in particular, a lot of boroughs need to work more closely together. The borough I work in has numerous boundaries with other boroughs. The ways that our borough interacts with those other boroughs differs massively. With some there are reciprocal arrangements with others, nothing at all. At least one of these ‘links’ was set up purely because one of the more senior members of staff used to work in one of the neighbouring boroughs and promoted these links through contacts he had there.
Passing over staff for a month in a period of crisis isn’t, perhaps, the answer, but more movement between authorities through secondment, may be a way of promoting good practice or at least identifying poor practice by someone coming in from the ‘outside’ for short periods of secondment.
The main barrier is the issue of pay but there is a lot of excellent work that is taking place within local authorities and sharing staff on short term bases for a short term period of work would also increase the experience of the workers identified.
Sometimes it doesn’t take a ‘top level down’ approach to see what can be changed, but rather an horizontal level.
Of course, I don’t expect this to happen. Everyone is over-stretched at the moment. The real challenge is how to open up jobs and not just child protection jobs, to newly qualified workers who do not yet have the experience required to take up the work that is there. How to be able to share skills and experience across different teams and different boroughs.
Perhaps on a less ambitious level, just more joint training and team discussions would be beneficial. Sometimes seeing the same situation with a different perspective can provide answers and solutions which had not previously been considered.
It claims at least 20 per cent of social worker posts are unfilled in more than half of teams, with vacancy rates of more than 30 per cent in some areas
I doubt that this will come as a surprise to anyone who has any knowledge of the sector.
Unison, unsurprisingly, is calling for more funding and wider recruitment to teams where there are shortages. While this is the only long term solution, in the short term, local government has lost millions of pounds in Icelandic investments and are looking to cut just about everything that moves. It is absolutely required to invest in services but it isn’t much of a vote winner.
Perhaps more cross-borough propagation of skills is something that could be considered in a non-crisis setting.
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I’d never come across the Lewy Body Dementia Association before but the website has a lot of useful information posted. Apart from the ‘Introduction to Lewy Body Dementia’ pdf being available on the site, there is a wealth of resources available including an active forum.
Thanks to the Tangled Neuron for pointing me in that direction. Hopefully, more people will become aware of the resources available and they will be of us. I know they will be to me and people I work with and for.
a third admitted “significant abuse”
Predominantly, this abuse is emotional and verbal abuse however in some cases physical abuse was admitted too.
The study, which was undertaken at University College, London found
In total 115 carers reported at least some abusive behaviour, and 74 reported more serious levels of mistreatment.
More than a quarter of the carers admitted screaming or yelling at their relative, while just under one in five said they had used a harsh tone or had sworn.
Other abuse recorded included threats to send the relative to a care home, or to stop caring for them.
A far smaller number admitted hitting, slapping, shaking or rough handling of the person with dementia
I’d like to say I am surprised by the findings but I’m not. The timing is particularly pertinent as later today I am being tasked to make an assessment of someone who is living in an abusive environment where the main caregiver has been over-stretched to the point of creating an environment which had previously been wholly positive.
The research points to carer stress and lack of carer support leading to abuse in the home setting. Often it is carers being pushed through lack of services or lack of support. It is definitely a scenario I recognise.
So what can be done?
Obviously more support and provision of services.
I’d like to see more direct time being spent with carers by even if it is just to talk things through. Of course it doesn’t have to be professionals as user-led support groups can work very well as support networks, but generally, I’ve found that with older people (as predominantly, the carers in question are partners or siblings who are similar in age to the person being cared for) there are concerns about actually getting to groups, providing respite care or a sitting service while they attend the group and the cultural unacceptability of allowing someone else to look after a loved one.
When I have been able to, I try to give time to speak with carers. It is, for the most part, welcomed wholeheartedly. Sometimes just talking through things with someone else can be some kind of respite (admittedly not much).
In fact, the Carers Assessments that we undertake are often a jump-point for a more extensive discussion about the nature of care and the need to devote time and services to the person providing that care.
If I were able to provision any service in the world with no thought to cost (I’m not a manager, I can do this), I would provide allocated workers to specifically work with and alongside carers but capacity doesn’t really allow this at the moment.
However, if care at home and a reliance on informal care is to be maintained and quality of life sustained for both the patient and the carer, support needs to be provided for both.
Not the cursory ‘let’s have an assessment’ support but genuine and ongoing space for the carer to express frustrations. Practical support when necessary and financial support to remove some of the worry and stress that will spill out.
The study recommends more awareness by professionals in discussing abusive behaviours with carers and not regarding the issue as taboo.
They wrote: “Professionals are often reluctant to talk about abuse, perhaps because of a fear that discussing and acknowledging it would necessitate referral of an adult for protection and trigger a punitive response such as removal of the person with dementia.
“This may result in an ‘all or nothing’ approach to abuse, where it is ignored until the problem becomes serious.
“Similarly clinicians may not consider abuse when seeing most carers, if abuse if perceived as a rare action purposefully perpetrated by amoral abusers.”
Ultimately, services in particular and society in general needs to become far more attuned to the abuse of vulnerable adults and look at reasons and causes as well as what can be done regarding prevention.
Community Care reports that a large, in fact, the largest ever, campaign to tackle stigma relating to Mental Health was launched yesterday in England.
The Campaign, called ‘Time to Change’ is a joint effort between Mind, Rethink and Mental Health Media and as well as television adverts, they have set up an expansive website which has a forum (which unsurprisingly, isn’t terribly active yet) and some blogs where people are invited to start writing. There are some interesting posts up there already and hopefully it will be something that is able to be maintained.
They have also set up a social networking site, Open Up, where people can post profiles and join discussions relating to experiences of stigma in the context of how it relates to Mental Health.
There is obviously a great push into ‘New’ Media and ways of communicating through this campaign but as always it is very much dependent on people participating and doing so actively.
On one hand it is about giving people who have experienced stigma as a result of mental distress, a platform and a space to discuss experiences but it is also about presenting adverts and information to those who might be liable to discriminate or stigmatise others.
They also have some information on the website about running your own local anti-stigma campaign along with resources such as posters, available to set things up.
Generally, I’ll answer most questions I’m asked honestly and simply. I tell people when there is a question they ask that I won’t answer but usually, my view is that people are expected to lay their lives and history before me and it doesn’t really make much difference to me if they know what area of London I live in (it’s not that close to where I work to bump into people but is near enough that often people are familiar with it). If I feel the response may detract from the person with whom I am directly working though, I might be vaguer than my instinct tells me to be.
So when I was asked last week
‘You’re not Jewish, are you?’ I was a little disarmed. There was a context to the question (although I wasn’t quite sure at the time). He was talking about an ex-employer who had, he felt, treated him less than fairly.
I don’t ever discuss my religion at work or with anyone just because it is less than relevant. When I have been asked directly if I am religious, I can dodge the issue far more easily. When asked what religion I am, I can gently wheel around it’s irrelevance to my work.
But to be asked within a negative frame by someone with whom I have been working fairly positively, if I do say so myself (!) was something I wasn’t ready for. I didn’t want to deny it but the tone and nature of the question indicated that a positive response was not the expected or wished for answer.
I mumbled a response about not being very religious in general (which is true, for the record!) but didn’t come out and answer positively (or negatively) which I could very well have done.
Of course, then man in question launched into a tirade of how much he hated Jews. I know I could have seen it coming. There is really only one answer that he wanted to a question like that.
I nudged gently at some of his thought processes to suggest that perhaps he was being a little less than fair. But I think by that point I had compromised myself too much and shortly after we were drawing to a close.
I wondered how much you collude without challenging. If someone had directed a similar tirade against people of a different race, I would have (and have been) more directional in my opposition to their views. There is, I have found, a way to challenge some of these views without being necessarily confrontational and usually I use a manner of presenting positive role models and positive situationing to challenge some of the views of people that I need to maintain a working relationship with.
Perhaps it was because this question hit a bit closer to home that I wasn’t so exuberant in my refution. Certainly something I need to work through.