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No decision about me, without me
Posted Tuesday 26 June 2012
It’s probably an understatement to say it’s been a strange year or so for the NHS, with a lot of changes being introduced. Many of us have personal experience of the NHS, either because we have had to use its services or have supported friends and family with their care.
Whether the NHS has helped you or not, one thing’s for sure - we need to make sure that the NHS works for us.
I’m working on Mind’s response to the Government’s latest consultation on shared decision-making. I’d like to hear what your thoughts and experiences of shared decision-making are in the NHS, so that we can include them in our response.
Everyone who uses the NHS should have the right to be fully involved in all the decisions made about their healthcare needs. From what their diagnosis and condition means for them, having a say in what treatment they’d like to how they want to manage their condition and what their preferred end result would be.
Decisions made about our healthcare need to be made with us. We should be able to tell the GP, nurse and so on what we feel is right for us.
Is it really rocket science to recognise that people who live with and manage their mental health problems are the experts in their condition? Surely we should be able to work together on our care plan - with the right help and support from professionals.
But this clear professional support is not always available at the right time, as Sue*, a Mind member, recently told us: “Not everyone can grasp information – especially at times when they feel very unwell. We shouldn’t feel left alone with information and to make decisions on our own.”
The Government has the good intention to make shared decision making a reality in the NHS. But what does this actually mean? Will people with mental health problems get the opportunity to be more involved in their healthcare when they have conversations with their GP? Will personal health budgets be helpful for planning care needs? Can people choose which psychological therapy they would like to use in their local area?
These are vital questions that we need real answers to.
Paul*, who is supported by one of our local Minds, told us: ”We should be able to define what we want and feel comfortable in sharing those thoughts with our GP… It shouldn’t be down to professionals to tell me what I should achieve as recovery.”
We’ll fight your corner, but to do so I really need your views and experiences. Please comment below, or email us with your ideas, thoughts and experiences by 17 July 2012.
Help us show the Government the realities faced by people with mental health problems.
Rezina Hakim, Policy & Campaigns Officer
*Not their real names
10 Comments
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"Help us show the Government the realities faced by people with mental health problems".
They don't care Rezina, all their policies reflect this, you can tell them forevermore it won't make any difference as your CEO has seen for himself. There's no point in telling them what people need, Mind needs a completely different and more assertive strategy.
Today's agenda is; diagnosis-care cluster-max 6 months support with 6-24 sessions max of CBT and medication-6 to 8 weeks recovery group-back to GP-work or die. -
Very well said, nobody knows your condition better than you do no matter what it is. And I agree that not everyone can grasp information but not enough is done to HELP them try and understand. I consider myself a fairly intelligent person, but my doctor gives me no say in what happens to me and simply tells me what will happen (hence why I always go and see the nurse practitioner now!)
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i have depression i have had councilor i am on tablets and exercise will help but the government dont think i have a problem as all they want is to put people in work they think that the people with depression can just snap out of it after the tablets and councilor then u are fit for work i worked for 4 years the pressure i got working did not help my depression . i dont want to be like this i hate been looked at as if i am a liar so this government is just for the rich people not the poor people
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Are your local Mental Health Services in your particular areas aware of Advance Decisions/Statements ? And if not, why not ?
an Advance Statement is exactly " what it says on the tin " a statement made in advance of what YOU would like to happen to you in times of crisis or ill-health.
Why not chase up your M.H.services to see if they exist, and if not, get together some like-minded people for discussions of how to go about it,see if other Mental Health services implement them, look around for ideas etc
That's what we have done with our local Mental Health Trust. -
Hi everyone,
Thank you for your comments.
I’d really like to hear more about the important points, experiences and ideas you have for shared decision-making through a phone conversation or in writing if you prefer. Please email action@mind.org.uk and I will get in touch with you.
@mindreader – influencing Government policy and campaigning for change has been challenging recently, with reforms being introduced rapidly where the Government hasn’t always listened to our concerns, especially in relation to welfare reform. We have had some success in health though, for example in the Health and Social Care Act where the Government accepted our amendments to put mental health on an equal footing with physical health in the NHS. As the new NHS starts to come together, we need to seize other opportunities to influence Government as the reforms and structures are rolled out in this transition year – such as through this consultation. We will also continue to actively campaign on issues such as welfare reform and crisis care. I agree that shared decision making should absolutely be about what the patient feels is their best option for recovery, and not only limited to medication or CBT.
@claire – you make an important point about information sharing and helping people to understand the information and not just swamping them with information which isn’t always relevant at that point in time, or often, quite difficult to understand and make a choice from. We agree people need support around this – and we also continue to make your point that people are often the experts in their own mental health symptoms and needs, which is why truly shared decision making is so important. It would be great to talk more with you about this.
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@William – we have been working hard for some time now on welfare reform to make sure the Government understands being able to participate in the workforce is not always possible when you have a mental health problem. You can get involved and read the latest here - http://www.mind.org.uk/campaigns_and_issues/policy_and_issues/making_benefits_fairer-welfare_reform
@Lynda – you’re right about the value of advanced statements. Along with joint care plans, we have made recommendations about these methods for shared decision-making in our Listening to Experience report and continue to campaign for this as part of our Crisis Care campaign. I would be really interested to hear about the work you have done with your local mental health trust.
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I was referred back to MH services for the first time in 20 years earlier this year. The first contact I had from them was in a letter also copied to my GP stating my case had been looked at by their assessment team and medication I was on was to be increased. It amazes me how decisions such as this can be made when no one from the team even talked to myself or even knew me as I was a name only on the referral sheet.
It took 6 weeks to see a junior doctor who assessed me, it then took another 6 weeks to see the consultant which I did a few days ago. At one point I was asked what help they could give but without actually stating what was available. I was told I would probably shortly be discharged back to the care of my GP as my worst relapse for 20 years appeared to be improving which I agree with. However, this has left me feeling isolated again. This is actually from a trust who has recovery principles so it has left me disilussioned with MH services. I am now going back to my own decision making and increasing my self-management of my condition. There appears to be limited decision making when it comes to mental health involving the individual and the medical model still flourishes in UK mental Health. -
Need to look at what the UN Convention on the rights of disabled people, thats us folks. It talks about supported decision making which means that the power imbalance can be redressed. Shared decision making describes an ideal which is not possible as we are thought to lack insight and doctor knows best.
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What is there for a shared decision to be made over? You can have a talking therapy, probably the standard ration of CBT as there is no other choice. You can have medication - you might be involved in a discussion on which one.
You can refuse either unless you are on a CTO.As I see it that's it. mindreader has summed the situation up very nicely.
What should shared-decision making look like?
Whatever we might think would be better, there is less money available for the NHS and for mental health in particular, so there will be fewer options available. And every bit of financing will have been fought for by people who could be better spending their time looking for innovative solutions and supporting people in distress.
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I came across this article a few days back but did not get a opportunity to ask whether it is only related to MH services by NHS or other aspects such as people with impairment and disability and how the NHS dealt with some sistuation with people who refused help?
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