On 28 September 2016, 20 people attended the 6th Portsmouth Trialogue meeting. Of these, 13 identified themselves as having lived experience, 2 as a carer or family member, 5 as professionals, and 3 as interested public.
Opening question :What strategies could we develop to help us deal with the barriers between patient and professionals?
Communication, as a patient you know what you’re experiencing but trying to put it into words, in that moment it is overwhelming sometimes.
It is hard to be as clear as you need to be to get the message across.
Struggling to get the words out, once we find the words we are often out of time.
It can take a while to get it out as it is easy to be overwhelmed by emotion
Bedside manner matters. Six people won’t be able to get through then one person suddenly gets through. we don’t have a luxury of waiting for someone we connect with
Going to do social things makes a difference, being seen as an equal out of healthcare environment helps.
Assertive outreach team used to do social things and practical things with patients and this really broke down the barriers.
Time wasn’t an issue for that team,
Complications of therapeutic power – 50 mins face to face and 10 mins writing up – Why?
Respect and validation goes a long way.
Making an effort to understand and genuinely care
Information matters, the professional has information about services, therapies and about you as a patient. As a patient you don’t necessarily have the same information. There is a power imbalance there.
Talking to someone not at someone
Be mindful of however lacking in clarity a patient might appear, there should be sensitivity to not taking about them whilst they are p[resent or in hushed tones in the vicinity. Even if we don’t appear to be in a rational state of mind, being rude in front of us is wrong.
We can be far more lucid then we appear.
Include patients in conversations.
EBE program, research of the lived experience, why are we still getting it wrong?
Making people feel individual and more than a diagnosis on some piece of paper.
Dr says antidepressants, patient says no, they recommend again. We do what we can to help ourselves. Should they get a second opinion before writing them up for psychiatric medication. That person’s life pathway is in their hands to some extent.
It is disheartening to think that just meds is the first point of call from a 5 minute apt with a doctor.
Sometimes someone needs to come with you to help you be understood.
If you know what you are going through and you know how to explain it then, fine. But sometimes it is chaotic and hard to explain.
Once you are on these meds getting off them is very hard and the side effects are sometimes awful.
There are other ways to deal with mental health issues.
The wait for assessment is sometimes very long, when one is unable to leave the house it is impossible to go in for appointments.
Panic attack in the waiting room
Sometimes told ‘are you sure it’s not just your period?!’
Being given attention as an individual, this is needed to explore what is going on as often in the state of crisis we don’t know what it going on.
All this is known, so what is it that makes it so hard? Is it just about resources or money or is something else going on.
25 years ago it was like this and it is depressing to hear it is still similar today.
Resources have definitely gone down although the spin is that they haven’t.
Someone somewhere is lying about resources.
Why do professionals have to see people where they work, why can’t they go out to the people?
People used to but now they don’t seem to.
Teams have completely disappeared, all the rest have shrunk. so appointments and time that people can give is less.
Psychiatrists seem to like doing visits in a little office.
Coming to the home is a far better way of finding out about people you can find out more in 5 minutes there then you can at an appointment
Safety is sometimes why professionals want to see people in the clinics. Is there something that services want to keep ‘special’ in the interaction?
It is important to think about what you want to say beforehand and writing it down can help, if you feel too vulnerable to do this then taking someone with you could be helpful.
On some websites eg. MIND there are useful booklets that can be helpful in how to talk to professionals.
Having to repeat the whole history every time is frustrating. Start with today at least. How are you today?
The importance of sharing and listening. One not telling the other ‘this is how you feel or what you need’
Dialogue needs to occur.
MECC – Making Every Contact Count – helping professionals to be more effective.
Many professionals are woefully unaware of the issues people with mental health issues live with
Professionals see their own areas eg. maternity and have little time to notice other issues such as mental health issues.
Talk to people as friends or equals rather than as patient/professional
Not using service language in front of service users as this can make people feel worse.
Many people in primary healthcare are so unaware that they don’t pick up on things until people get the help they needed months ago.
Observant professionals are needed
Lots of initiatives around although it is hard to know how effective they will be and how long they will be around.
Social skills, body language training etc might be useful
‘Hello my name is’..lovely initiative as being honest and transparent is so important. So at least you know where you stand.
Staff in one home ask am I going out with you as a support worker or as a friend? This is helpful.
understanding demeanour is important.
Check everyone individually, we are all different.
Drs get to work in MH services as part of their training but not everyone gets to do this.
MH should be in everyone’s training.
There are so many barriers.
Meeting criteria for services is an issue.
These issues are just human ones, not necessarily a service thing but the ability to read each other.
It isn’t about resources either it is about soft skills like listening, compassion and so on. It is about people skills. If staff are well they are likely to be able to provide more humane care.
compassion fatigue, burnout are issues. What does that feel like?
The compassion doesn’t go but people get tired, they’ve done it for a long time or found
some interactions to be really emotionally draining. That can be overwhelming.
People who work with MH issues can be so admirable.
Some just lose interest though and fail to develop any kind of empathy, so patients are dismissed.
Most services that involve contact with very distressed situations where there is lack of resources this is going to happen.
Other services cause the most frustration to services, services don’t believe each other. I see them day to day you see them for an hour, who knows best!?
We all need to feel supported and valued. You can’t pour out of an empty jug. The professionals need to feel supported doing their job so they can do their job well.
Some excellent practitioners out there but such a rubbish service.
People can be too formal, prim and proper. Having a human reaction helps to bring down barriers.
Having a human connection.
Mindfulness – enjoying one thing at a time. Maybe we have to learn to deal with one thing at a time rather than multiple tasks all the time? How practical this is is a question.
I don‘t want the professional in front of me to think about what has happened or what might happen but to really pay attention to me.
Compassion – if you really connect then this happens automatically. Rather than having to strive for it.
Cultural awareness would be helpful, this is a clear barrier.
How to help professionals to develop themselves.
How the future is going to look in MH services, could we bridge the gap between professional and patient. Peer support could form the bridge?
People need to be able to self-refer and then be matched with an ideal volunteer who has similar experience of their difficulties.
This is likely to be able to stop that person reaching crisis point.
We can’t all maintain high functioning so we have to take things a step at a time. Some times we are more able than others.
Watch that local gov, community and MH services are all working together. Important.
Co-production – 5 year plan where is it?
All groups in the mix have something to offer and all need to be involved.
Communication between agencies is poor, information sharing is not there, improving this would make the world of difference
How could that be improved?
Being open and honest, sharing things
Housing assessment in another area, it was extremely good, sat down with the managers of the home for over an hour before and sharing information so clear decisions could be made.
computer systems don’t correlate with another one, professionals don’t know all the info so how are people in crisis supposed to be able to know the info?
Personalised plans about things that really have worked in crisis before are needed. Like a passport that we carry with us.
Some people don’t want their information to be shared with all and sundry. We should be able to decide for ourselves who sees what.
It is a difficult balance between sharing all and maintaining privacy.
Some places do involve people in their crisis plans.
Misunderstandings exist on all sides about what info one service may have compared with another.
IT systems are the bane of everyone’s life.
Organisations don’t all use the same ones, the systems don’t talk to each other.
Paper Passport is a lovely idea but most places use an IT system.
Health and social care is changing constantly.
Passport could be on a USB stick! Then there would be problems with encrypted systems
Compassion fatigue is not normally caused by the patient care it is more linked to continual reorganisation and restructuring. Staff have to spend a lot of energy in managing continual change. for 30 years politically the public sector has been rolled back and increasing the private and commercial sector, one factor out of that is increased contract culture so all the organisations are competing for limited resource. So there is an organisational tendency to hold on to what you have, information and all.
There needs to be more investment but not about going back in time. Moving forward.
Can’t buy into it all being better in the good old days. Some things were better some things definitely aren’t.
An argument needs to made in investment.
Peer support shouldn’t be seen as cheaper as it needs a lot of support and investment in order for it to function well. It is all being done on the cheap.
A powerpoint presentation about likes/dislikes etc for staff that enter your care circle. Really good idea.Great way of sharing ways to good practice.
Hard to measure the success of good approaches.
What works for one person doesn’t work for another, so difficult to get the information to the people at the top to help encourage them to do things differently.
A lot of services, have set targets that have to be achieved. See so many people… deal with so many of this particular situations…
At what point do you decide who has an enduring problem and who has an isolated crisis but two years down the line they recover and need no more input?
Always to work with people with the expectation that they will be managing themselves in the future, optimistic
putting money into keeping people well.
How to stop people getting to crisis point.
How are we promoting positive wellbeing?
the money is reactive, it goes to where the crisis is. 50% of all monies is used by 6% of the population.
There are initiatives in the North where whole teams of professionals are working together to keep people well in the community.
More emphasis on early intervention is required.
What if you don’t fall into the most vulnerable group? Then tough, you don’t get a service.
Is this where the peer led work is going to be most helpful?
Probably not really the idea
Rather than competing together then work together.
We are all in the same boat, having a common purpose.
Need to address ideas and sense of rivalry between groups too.
Seeing each other as colleagues, co-producers working together
We are all peers. We are all human.
Remove some of that power that professionals in MH have, by doing this it will reduce a lot of barriers.
Responding to our abilities – what can we do looking together at ways we can help ourselves and pull together.
Always we should be looking at how to promote good mental health without attaching stigma to it. Very hard to do.
Those who feel well will probably want to ignore it until they are in crisis. So how people can look after their wellness generally.
Should MH be included in the national curriculum?
Building awareness of MH from a very young age. Don’t bill it as something to do with MH but call it something else.
Make it an everyday normal thing to talk about MH.
PHSE has been cut from schools too.
Next question agreed is: Responding to our abilities – How can we help ourselves and pull together? & How can good MH awareness be developed?