Random Round-up

As I’m still creaking back to normal, I have come across a number of articles that made me consider and ponder which I thought I’d share. It is a little hotch-potch of different things about a variety of subjects but that’s just the way my brain is working (or not!) at the moment.

There’s an interesting piece in the Los Angeles Times written by a doctor who has been diagnosed with Alzheimer’s. It’s a short piece with perceptive insights worth a look.

Martin Narey, the chief executive of Barnardo’s has again been saying that he believes more children should be taken into care earlier. I haven’t explored the details of his views in any great detail but it is always interesting to challenge confidently held orthodoxies once in a while.

I certainly think that providing additional support to 18 and on to 24 should be a minimum expectation for children in care .I also wonder at where the additional foster care placements are going to be coming from although it reads that Narey has more ideas about extending childrens’ homes.

The Guardian has a panel article written about perspectives in caring. It is worth reading through. It consists of six personal accounts and suggestions as to how things might be improved for carers.

It’s a well put-together piece and the conclusions are unsurprising namely that carers should be valued more in our society both financially and in relation to moral authority regarding their knowledge of the needs of the cared-for person.

I was surprised/horrified by this report from a home carer quoted in the piece

Take this example: two ladies in my care are living together. Mother and daughter both have very different needs. The mother struggles to walk as her knee joint replacement has become septic and needs removing. The daughter has learning difficulties, asthma and is morbidly obese. Easily fixed? Sadly, no. The mother also suffers with severe dementia and refuses to have any personal care or treatment. She is legally responsible for her daughter, and also prevents her from having treatment.

Social services do not have the power to make both women wards of court. We, as carers do not have the authority to even call a GP to them, unless it is an emergency. My fear is that these ladies, who are already being terribly neglected, will come to serious harm, an occurrence which will force an enquiry. Why can’t this be stopped now? Because carers are gagged. We are advised by our agency to “cover our backs” and make notes of our tasks and concerns at each visit, which we do, diligently. These records are collected once every few months and immediately archived.

For me, capacity decisions cried out from this vignette. Do the women have capacity to make these decisions? In which case, no decisions can be made on their behalf as they are capacitious but if there is a question of the lack of capacity over the issues of health management or care, then this is exactly the situation that the Mental Capacity Act should be able to clarify through the use of the Court of Protection if necessary. The carers DO have the authority to call a GP if there is a lack of capacity or understanding of the need for medical attention. I truly hope that the legal position of these women is clarified and that the carer writing realises that she does indeed have the responsibility to call a GP if she feels a GP is needed and capacity is lacking.

I hope her agency are well aware of their own legal responsibilities.

Finally, an Irish MEP, Nessa Childers claims that Facebook is a public threat to the mental health of a generation. She states that

the social networking site is an addiction that caused people to “crossed the line from social networking to social dysfunction.

It’s easy to ridicule this kind of position due to a lack of understanding or intransigence about attitudes towards ‘new’ ways of connecting or networking. Personally, I see ‘facebook’ and ‘social networking’ as a tool to use rather than a use in itself and like everything, it is how we choose to use the tools rather than the tools in themselves.

Hopefully, I’ll be able to build up a bit more consistency in the posting as I still work towards recovery! Otherwise, it’s just a bit of pot luck in the meantime!

Moving on Individual Budgets

And so it starts. Currently we are still in ‘pilot’ phase of the Individual Budget roll-out – the forefront of the personalisation and self-directed support agenda and if that sentence made little sense to you – you can probably count yourself lucky!

Very basically there is an ideologically  welcome move towards more control by users of services around the services they receive which is a very noble and worthy cause. We are trying to work through some of the details and our local authority is trying to put systems together through the pilots that have been running. While I’d like to hide my head in the sand and pretend nothing is changing, not because I don’t think it is a worthy ideal, but rather because of the intense increase in bureaucracy and the time needed to work through the new and somewhat shaky systems being put into place.

I decided that I really needed to be positive and try to actually understand what was to be happening because it isn’t going away  and so, in conjunction with a service user and her daughter (main carer) who want to engage with the process and ‘see how it works’, I am doing what I can to work through the systems as they exist.

The main pilots so far have focussed on younger adults with disabilities, people with learning disabilities and older adults with fairly straightforward care packages.

Although at the time, I explained I felt they needed to tackle some of the more complex examples at the time, mental health services were very much left out of the ‘loop’ of information.

Currently, I have assisted in the completion of the self-assessment questionnaires and have validated them. As the service user in question as fairly advanced Alzheimer’s type dementia, there was a significant input from her family and carers and I assisted considerably myself – so the ‘self-assessment’ idea was somewhat lost through that process but I felt it was important to work through the ‘processes’ with a person who has little capacity to engage actively with the assessments and realistically, it will involve many of the users of our service.

I tackled the RAS (Resource Allocation System) although I’m not entirely confident it is ‘correct’ and so my next task is to take the documents to a meeting to discover what the ‘indicative budget’ is and then, assuming all goes well, to return to patient and carer (I am running two different applications side-by-side – one for service user and a different one for carer in her own right).

I might have messed the entire thing up of course, but as I expected to user and carer themselves, the worst thing that could happen at this point is remaining with the status quo while I spend time working things out. The positive outcome would be more flexibility to choose carers and tasks that are more appropriate to their individual circumstances and to have more input into the support packages that provide the best outcomes.

But.. and this is the big but.. so far, getting as far as we have, namely writing up all the documentation and putting the forms, assessments, resource allocations etc has taken me the good part of a couple of days. That’s not including the three specific visits each of at least an hour to work through the actual assessment forms. Which would be fine and dandy if that linked in with the time taken on other work, emergency assessments, people being discharged from hospital,  rushing to court to get warrants etc.

Suffice to say the team isn’t overly heartened by the lack of support in implementing these new systems – the local authority has put a lot of support into the Community Care teams with additional workers and weekly support groups  but in the bleak and distant mental health teams, we are left increasingly on the periphery and detached further from the general information streams and planning but my thought is that at least by attempting it, we won’t be completely left out and if I make a mess of my attempts, at least I am identifying a genuine training need!

Hopefully, I’ll be able to update the process as I go through it.. .

[picapp align=”none” wrap=”false” link=”term=paperwork&iid=5065548″ src=”5/b/5/9/Young_woman_leaning_5038.jpg?adImageId=7817131&imageId=5065548″ width=”380″ height=”285″ /]

Admirable Admiral

John Suchet, a newsreader, hit the headlines yesterday by running with a series of interviews about his wife, Bonnie’s diagnosis of Alzheimer’s and the way that he, as her carer, had managed this diagnosis as well as the support that he had received.

He spoke of the help given by Admiral Nurses – a kind of Marie Curie-type set up – with specialist dementia nurses rather than cancer nurses.

image Muffet at Flickr

Anyone watching or reading the interviews given cannot help but be moved by the way that Suchet describes the fading of the memories of the woman he is married to.

Carers do need a lot of support through the process of a diagnosis of dementia.

One area that Suchet spoke about was the need for a wider roll-out of the system of Admiral nurses – although I suspect that is what the Dementia Strategy is envisaging. And in the course of his explanation of the role of the nurse, I recognised a lot of the roles that I undertake myself – or at least endeavour to – from explaining and preparing the changes in relationships and needs as lover becomes carer.

Of course, there is not capacity for the work in CMHTs to be replicated nationwide – nor for everyone who has a diagnosis of dementia to be allocated a care coordinator and the service that Admiral nurses provide is far from national.

In fact, the terms of postcode lottery were mentioned frequently.

I have often thought that if I had a magic wand (or failing that, just more authority and experience) to change the service we provide, I’d like to allocate specific workers to carers. I definitely think a lot more needs to be done, especially with older people where carers are not as able to attend the support groups that exist across the borough.

We don’t have Admiral nurses in our borough but we are blessed by a wonderfully active local branch of the Alzheimer’s Society.  I have no doubt that a roll out of a service which provides support and information could be anything other than beneficial.

Sometimes it is a matter of having a telephone number to call and a familiar voice to answer some of the questions, doubts and worries that come with the onset of dementia.

I was considering with the public campaigns of Terry Prachett and now John Suchet in going public regarding dementia, if we are turning a milestone in terms of publicity.

I also ponder on the fact that the people who become the public spokespeople for dementia and Alzheimer’s are those affected by early onset Alzheimer’s. I wonder if it is part of a marginalisation of older people or just an ability to identify more with people who don’t seem to be ‘so old’.

Not that I’m knocking it – I think identification with public figures does go a long way to societal acceptance. Maybe people who had not thought of discussing their experiences of their or their family’s dementia might be encouraged to do so as a result of these pushes.

In any case I  hope some of the stigma that exists around dementia will drop away and people will feel more able to talk.

It does bring me back to a discussion I had a couple of years ago with the wife of a man who has severe depression to the extent that he pretty much wasn’t getting out of bed. She confided to me that she almost wished she could tell people he had dementia because she thought they would be able to understand it better than telling them that he had depression.

Food for thought.

Abuse and Stress

The BBC reports on a study published in the BMJ (British Medical Journal) which questioned carers of people who suffer from dementia and found that

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.

image doll damned at Flickr

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.