Working in dementia services at the ‘frontline’ I often consider what messages I’d feed back to the local and national policy makers if I ever had the opportunity. Of course, I don’t have these opportunities as I’m not a manager so I thought I’d imagine I were at an important meeting with Norman Lamb, the minister for Care Services.
This is what I’d say.
Make policy practical. Making the right noises about setting up a wonderful plan to ‘challenge’ dementia is all well and good but I see nothing of that at the ‘frontline’.
What I see are cuts. I see respite narrowing in terms of ability to access. I see provisions which had been helpful, closing. I see a lack of beds in the local hospitals when they are needed and I see people who need support being denied it because there are no provisions left.
So take your pleasantries and policy ideas and come and spend a day with me in the community and you’ll see why I am impatient and unbelieving about the platitudes that emerge from those who don’t seem to understand what is happening ‘out there’.
I’m tired. I’m tired of saying ‘no’ to people whom I see need services because the provisions are so tight. I’m tired of saying ‘no’ to people at the early stages of need when I know it will prevent higher costs in terms of pain and suffering but also in terms of money in the longer run. I’m tired of logging targets that have no meaning in the lives of those whom I work with. I’m tired of jumping through artificial targets so I can ‘prove’ I’m doing my job when neglecting visits to actually talk to people because I have to catch up on the paperwork.
I have waited for years for a fair system of implementing personalised responses to care which include people with dementia but am still waiting because the entire focus on the programmes developed through personalisation have been on those who are more able to be involved in the processes or those who have involved family members to help them. I’m tired of wading through appallingly designed forms, self assessments and RAS (resource allocation systems) that focus entirely on physical health needs and marginalise mental health needs thereby ignoring equality legislation.
I want action and yes, sometimes, action includes money. I know what the people I work with ask for and I know I can’t deliver it – not through a lack of will – I want to be able to go home thinking I’m doing a good job and doing my best – and for the most part, I think I do – but the best I can offer is very sparse. The best i can do isn’t good enough.
We have few residential homes locally and are placing people further from their families. We have nothing ‘creative’ left to offer as those agencies which are helping with ‘support planning’ aren’t trained to offer support in non-directed advocacy and therefore if someone doesn’t ask, they don’t get.
So what would I do? I don’t have a budget and it’s probably for the best as I’d steam through it in five minutes – one of the many reasons I’m not and will never be a manager – but I would focus on trying to create a system of social care which offers equality of access to good and creative support planning.
I’d commission more non-directed advocacy into support planning. I’d roll out Individual Service Funds for people with dementia and I’d allow more time for carers – and for social workers to work with people who have dementia because honestly, that’s what’s needed.
However all we get is platitudes about how wonderful services will be without extra money being provided. Yes, I’m sure early diagnosis is important. It is. But please, please can the Department of Health and local government concentrate their minds on what is happening now and the poor services we are providing now and do something, anything to make them better.
I want to do my job well and I want to support people but all the tools I had available for doing so are being ripped away from me. It’s sometimes hard to keep the motivation up when you don’t believe you are helping anymore.
I’m the person saying ‘no’. Me, not the Head of Adult Services, not the Ministers responsible, not the councillors responsible. I sit in people’s homes and tell them what they are not entitled to anymore. I want those who make these decisions to take responsibility for that and to listen to us who go out there and who see.
That’s what I’d like.
picture by Liberal Democrats at Flickr
Unsafe Spaces 
Ermintrude- I think this is a really powerful and heartfelt opinion piece. The social care sector is fortunate to have people with your skill, knowledge and person centredness still engaging directly with people. There are many others but we need more. Please don’t give up trying and I hope the Minister hears your call….
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Ermintrude no doubt you are demoralised by a system originally designed for a different population other than the one you service, which is and will be the significant group requiring much greater imagination (if not resources) to care for adequately. Dementia is a progessive illness and the idea you can prevent it, since so little is understood and there is no ‘cure’, is unreal.
You at least have a wage. Think of the more than 800,000 people and their unpaid carers struggling with a system that seems hell bent on making them ill. Many care 24/.7 for someone with a disease that you can barely comprehend from ‘unrealistic training’ sessions.
Most unpaid carers keep going until they reach breaking point, and we all know that it takes a permanent toll on their health, finances and future life.
Governments think some celebrities reflect the reality of all those with the same ‘label’. But the problem is so do many front line staff who parachute into the lives of these people for brief, meaningless self assessments and personalisation.
If you do not already view this- Alzheimers Soc’s Talking Point discussion / blogs site gives a very distressing and troublesome picture of the reality of dealing with dementia and its being poorly understood. Carers feel at loggerheads, and at times demonised, by a system which has no idea of care- just control/ containment.
It is no wonder that people with dementia suffer neglect / abuse in health and care institutions and families are expected to cope stoically without help. No point asking the civil servants or their masters for help, they have done little to seriously listen to those with the most practical experience.
I do indeed read the Alzheimer’s Society board as well as hearing stories every day and while I’d like to think i have an understanding, i wont presume to know as I get a feeling that whatever I say or write here it won’t be what you want to read and I appreciate that. There’s lots of cause for anger in the ‘system’. Thanks for your comments and response.
Well meaning politicians really do need to start listening to the people who have practical experiences of the issues our society faces. That includes carers and staff and members of the public who worry about their neighbours if they have not seen them for a few days. We are all involved but we are not all listened to, despite our individual knowledge and skills. Something has to change to demonstrate that we are a compassionate society. Listening to each other is a start. Perhaps we should all write a letter to our politicians?
This is an idealistic view of the way society operates now. There is no going back either. Many will grow old alone and die unnoticed with a flux of neighbours coming and going who neither know of their existence, or do not really care being preoccupied with their own problems. The growth of social adult care provision has significantly replaced ‘total family care’, because extended families living close by has declined. I can recall 3 generations living together in crowded housing- would not be allowed today.
The trend is to see the elderly as burden- only this morning a TV debate as to whether health care should be denied to them with doctors deciding if treatment is worth it due to cost/ benefits for the very old. Then you have the DoH / social workers talking about increasing safeguarding powers to protect the very same people.
What puzzles me is how anyone thinks these issues are not related. Basically, state neglect / abuse can be justified on economic grounds. Families, sometimes struggling in isolation do something which perhaps is not good behaviour, but falls far short of choosing neglect by omission, can be reported and subject to investigations which leave permanent scars because they are so badly and inconsistently conducted. At one extreme involving the removal of the service user to another place of ‘safety’ only for that person to become so distressed / depressed as to die rather rapidly from the trauma of being taken from familiar surroundings, or to be abused by the staff in institutions who then cover up..
No one is protected, by either by the staff working in the system with ideologies that fall far short of the realities of the disconnected thinking, the civil servants who develop policies, or their political masters. Everyone fighting for their beliefs and positions in the name of MONEY / JOBS / POWER/ BELIEFS.
If the people who work in the ‘industry’ do not see the lop sided thinking- it is no wonder politicians (or their civil servants) do neither. We end up with the society we create.
I think we all see lopsided thinking
True insight leads to radical change at a personal and interpersonal level. It means moving entirely outside of the personal comfort zone.
There is no evidence that those who hold any ‘professional status’ actually take personal risks with their livelihoods, on the contrary I have noted that although some people may acknowledge things are wrong they will not ‘bite the hand that feeds them’. Needless to say I personally have not feared to do so.