Newbie and Support Group Idea

[ladymisswolfe]

Hi All,
Just found this forum and so grateful to have found you all. I have BPD (emotional dysregulation) which it has taken 6 years to discover. I live on the Lizard and I'd really like to start a self help group for BPD,BP, Depression sufferers, just to talk with each other once a week, maybe make some friends, have some group activities if we get on well and feel like it.It would be a daytime meet at my house and wondered if anyone might be interested? Just putting it out there really...
Love to hear from you and PM me if you wish.
I'm female aged 38 by the way!

Ladymisswolfe

 

[*Sapphire*]

Hi and

I would like to go to a self help group for BPD but in a DBT context, for those that have been through DBT or have read about it and are trying practicing the skills. I am making enquiries with a top DBT therapist about this.

Unfortunately with the problems associated with BPD I would find an unsupported group with no boundaries very difficult. I have had bad experiences of being around others with BPD without this kind of support, as I know others have. In my opinion I would be very careful about who you invite into your own home.

 

[ladymisswolfe]

Hi,
Thanks for your advice. I do agree and had planned on just putting it out there to see what response I got first and then come up with some kind of screening idea on the phone first. I'm figuring that as someone with BPD, I would find a group of similar sufferers comforting to be around and many of us down here in Cornwall are so desparate and without facilites or treatment that I needed to do something, and have been encouraged to do so by any professionals I have seen.
xx

 

[*Sapphire*]

I can understand that. Unfortunately I am not sure how effective telephone screening would be, as BPD and the behaviors associated with it can be very complex and ever changing.

I do wonder if there is the potential of it making things worse rather than helping? It is common with BPD that when one person spirals that others do too. I have/had BPD, I have experienced this myself.

I would always strongly advise that you meet in a neutral place rather than someones home. You really can not assess someone on the phone, psychiatrists and therapists don't.

Have you tried DBT self help?

http://www.dbtselfhelp.com/

Or reading Marsha Linehans manuals on DBT(they are available to buy online)? They could give you some very good ideas of guidelines and boundaries for your group, so that the emphasis is on helping rather than hindering.

 

[RayJ]

Setting up a BPD self help group

Hi All,
Just found this forum and so grateful to have found you all. I have BPD (emotional dysregulation) which it has taken 6 years to discover. I live on the Lizard and I'd really like to start a self help group for BPD,BP, Depression sufferers, just to talk with each other once a week, maybe make some friends, have some group activities if we get on well and feel like it.It would be a daytime meet at my house and wondered if anyone might be interested? Just putting it out there really...
Love to hear from you and PM me if you wish.
I'm female aged 38 by the way!

Ladymisswolfe

Hi Ladymisswolfe,

I have to agree with Sapphire77..... do not give out your home address and be very careful of setting up a self help group without research.

I have had BPD for most of my life and like you have found it hard to share with like-minded people.

I did attend a self help group in Truro, but it was so chaotic and disruptive, many service users became worse because of it.

I do run a drop in at Redruth YMCA on Wednesday's 12:00 - 2:00pm. Its a general drop in, this has been running for around 18 years and have only had one incident.

I would say you first need to know what type of BPD you are, everyone is unique, there are over 550 listed variants.

There is a project running Falmouth, (but only for people living in the old Carrick area), this is professional led, yet there has been trouble with some of the clients.

I had a meeting with the Chief Executive of Cornwall Partnership Trust, on Wednesday, this week and stressed the need for more resources for BPD. My daughter also had the condition, but lost her fight for life whilst in Longreach two and a half years ago. There were a lot of failing on the day and the meeting was all about the changes they have made and also what changes are needed.

It would be good if only I could get hold of the figures of the actual number of people who has BPD in Cornwall. I did ask the question at my Daughters inquest about the number of people who are managers for Personality Disorders in Cornwall..... the answer???? ONE.

I belong to the Service User Reps Group and have done for about sixteen years and have constantly tried to get more services. It was myself who first brought to the attention of the CPT, Dielectral Behaviour Therapy (DBT). Though I do believe there are some more effective therapies now a days.

Myself (after all these years, my first episode was at 9, I am now 61) have been having Bio-Dynamic Body Psychotherapy, for the last two years and it is working. I do hope to write a paper on the results, once I feel I have gone as far as I can go, probably another two years. But I do believe if such therapy was given to someone, once someone has a diagnoses, then I do not believe it would take so long.

I believe there are two clear types of Borderlines. The aggressive (Acts outwardly against others) and the other is regressive (Acts out on self which includes eating disorders and harm..... that is my beliefs and not a professionals). But my therapist does work with me via the regressive self.

I'm also working with the new Service User Network Cornwall ( http://suncornwall.com ). Tomorrow I am working alongside with new social workers on a course at Cornwall College via suncornwall and next week I am also meeting with a group of second year psychologist.

Another website, where I gained a lot of insight is http://toddlertime.com It's worth having a look in all areas.

In the New year a new group is starting in Penzance, it starts on January 8th and will be on every Tuesday, will be doing Yoga, Voice and Movement.

On Wednesday's at Sancreed House, Sancreed, there is Arts and Crafts, Wood Carving, Potery, Voice and Movement, Therapy...... starts at 11pm to 1pm and also from 2pm - 4pm, it cost £2 a session. Usually I have someone else running the Redruth Friendship Club, so I can go to Sancreed.

Hope this has been some help, there are some other things happening in the New Year and I will try to see if more things can happen in the Helston & Lizard area.

Take care

(((((Huggies to you))))

Ray

 

[*Sapphire*]

To Ray

Hi Ray, and I will say as i have not met you on here yet!

You have raised some very good points, and i am very sorry for the loss of your daughter. Like you I have heard and had such bad experiences of mixing with people with BPD even within a hospital environment. I hope ladymisswolfe takes your experiences on board.

I would be very interested in your views and experiences of alternative therapists than DBT that you feel are better, purely for personal interest if you wouldn't mind pm-ing me or putting up a thread about it?

For me DBT was the very first time I actually got treatment purely for my BPD so it had a huge impact on me, but I can see it has many faults and flaws. I, like you also believe that if when I was first diagnosed I received proper treatment for it years ago then I wouldn't have had to spend so long and still consider spending so long in therapy and treatments. I am not all there yet, as I said DBT has many flaws but I am being referred for further therapy.

I wish you all the best on your journey.

 

[dib4uk]

Hey everyone.

Well I belong to a service user network (Sun group) and I find it extremely helpful and very well organised and structured... maybe theres something similar in your area? Or maybe contact your CMHT to see if they have any pilot groups about to be set up for personality disorders.


Good luck.

 

[RayJ]

BPD Support

Hi Ray, and I will say as i have not met you on here yet!

SNIP

I would be very interested in your views and experiences of alternative therapists than DBT that you feel are better, purely for personal interest if you wouldn't mind pm-ing me or putting up a thread about it?

Snip/
I wish you all the best on your journey.

Hi Sapphire,

Thank you for your reply,

I will reply on this great forum, so others can also join in.
But at the present time ( well its like it most of the time) I am very busy.... But I have some time in just over a week and I hope to catch up on all my outstanding emails (635) and other internet related stuff. But I will still be lurking and add the comment here and there.

Good to know you are finding your way through the jungle and the journey will be much more pleasant in the future.

Hugs to you.

Ray

 

[RayJ]

SUN (service user networks) support

Hey everyone.

Well I belong to a service user network (Sun group) and I find it extremely helpful and very well organised and structured... maybe theres something similar in your area? Or maybe contact your CMHT to see if they have any pilot groups about to be set up for personality disorders.


Good luck.

Hello dib4uk,

Thanks for your reply. Can you share a little about your SUN group. The Cornwall one is very new and has been set up as a shadow Service User Involvement group.

The original Service User Mental Health Forums in Cornwall has been operating for nearly twenty years. But over the last three years, a change of co-ordinator and a change of policy put on us, the who thing has fallen apart.

It is no longer service user led, as it say in the NHS Act of 2006, but the co-ordinator has now become a manager and dictates the way things will run. Of course this has diabled most service users. From an active 200 - 300 members, to around 10.

So the Service User Network is operating in the background and is willing to go alone, should the main Service User group not get its act together. A launch date has been set and a number of affluent backers are already on board. I would still like to see the original principles and support put back in place.

At present so many users are being let down and with Cornwall having the largest percentage of suicides in any County throughout the United Kingdom it is so important to have something in place as soon as possible.

SUN Cornwall has already had requests from both Health and Social Care to help in support with training of new staff. Some of us are already involved with first year Social Workers and a number of second year Psychologist.

Once again if you could share with us a little about your SUN, it could help others and of course if anyone else has any information about their area, then please do join in. If you have any websites of Service User Involvement, then please share. Let US make TWENTYTEN (2010) the year of the Service User.

(((Hugs to ALL)))))

Ray
http://suncornwall.com Sign up and become a member and help us in developing a website for ALL service users of Mental Health.

 

[dib4uk]

Hello dib4uk,

Thanks for your reply. Can you share a little about your SUN group. The Cornwall one is very new and has been set up as a shadow Service User Involvement group.

The original Service User Mental Health Forums in Cornwall has been operating for nearly twenty years. But over the last three years, a change of co-ordinator and a change of policy put on us, the who thing has fallen apart.

It is no longer service user led, as it say in the NHS Act of 2006, but the co-ordinator has now become a manager and dictates the way things will run. Of course this has diabled most service users. From an active 200 - 300 members, to around 10.

So the Service User Network is operating in the background and is willing to go alone, should the main Service User group not get its act together. A launch date has been set and a number of affluent backers are already on board. I would still like to see the original principles and support put back in place.

At present so many users are being let down and with Cornwall having the largest percentage of suicides in any County throughout the United Kingdom it is so important to have something in place as soon as possible.

SUN Cornwall has already had requests from both Health and Social Care to help in support with training of new staff. Some of us are already involved with first year Social Workers and a number of second year Psychologist.

Once again if you could share with us a little about your SUN, it could help others and of course if anyone else has any information about their area, then please do join in. If you have any websites of Service User Involvement, then please share. Let US make TWENTYTEN (2010) the year of the Service User.

(((Hugs to ALL)))))

Ray
http://suncornwall.com Sign up and become a member and help us in developing a website for ALL service users of Mental Health.

Hi Ray,

Well the Sun group where I belong to is a new operation that has been developed from another london based Sun network. All I can say is that for me this has helped me to combat isolation, help lower stress, and it has helped me to understand that I'm not alone in this struggle- as I'm fairly new to the whole thing of personality disorders.

I'm aware of one based in south west london for over 5 years now, and the cornwall one- via my own researching methods, and the one that I belong to.

All I can say is that for others in other parts of the country maybe contact organisations such as Mind, Sanelilne etc who can help you fight to make more Sun groups avaliable. Also like I said previously, contact your local CMHT and maybe advocate some pressure to your local MP's.


Hope that this helps.

If anyone wants more information about what the Sun groups are I can send you a link.

 

[RayJ]

Hi Ray,

Well the Sun group where I belong to is a new operation that has been developed from another london based Sun network. All I can say is that for me this has helped me to combat isolation, help lower stress, and it has helped me to understand that I'm not alone in this struggle- as I'm fairly new to the whole thing of personality disorders.

I'm aware of one based in south west london for over 5 years now, and the cornwall one- via my own researching methods, and the one that I belong to.

All I can say is that for others in other parts of the country maybe contact organisations such as Mind, Sanelilne etc who can help you fight to make more Sun groups avaliable. Also like I said previously, contact your local CMHT and maybe advocate some pressure to your local MP's.


Hope that this helps.

If anyone wants more information about what the Sun groups are I can send you a link.

Calling all Service Users, Carers, Health Professionals, politicians in fact anyone who has an interest about mental health in Cornwall. It is hoped to re-start the Mental Health Forums. To kick this off, a open public meeting is taking place this Thursday 25th Novemeber 2010 at 11:00am until 2:00pm, the venue is Truro City Hall.

The programme being.... a Service User Presentation followed by an "Any Questions" on the panel will be Senior Mental Health Managers, Commisioner for Mental Health Services, a G.P. and hopefully a Senior Politician, along with four Service User Representatives. The Chairperson will be a Service User . Then there will be a FREE refreshemnt break, followed by a from the floor "Question Time".

More information can be had on www.SunCornwall.com ....... Service users can claim for travel or if you have any transport issues, then please ring Jane on 01872-243532