Community Support in Cornwall & Plymouth
BEWARE! WE ARE SERVICE USERS SUPPORTING SERVICE USERS, NO ONE MAKES ANY MONEY FROM THE SERVICE USER NETWORK. THE NETWORK BELONGS TO ALL AT NO COST, SO PLEASE JOIN US. WE DON'T BEG FOR FUNDING AND WE DON'T JUST FINISH BECAUSE OF FUNDING STREAMS DRYING UP. WE HOPE YOU JOIN US BECAUSE WE KNOW HOW PAINFUL EMOTIONAL & MENTAL ISSUES CAN BE, WE ARE ALSO VERY AWARE OF SOCIAL ISOLATION AND THE DISTRESS THIS CAUSES. WE HAVE BEEN ONLINE SINCE 1995 AND STILL SUPPORTING EACH OTHER.
Bridge Mews, Portreath is a lovely place, but we are growing and need to move to somewhere with more footfall and much easier to get to. We have been in Portreath for just over a year and have learnt a lot. Thank you all at Bridge Mews, especially those who received support and all of our customers, who have kept us going. We are still funded 100% by Service Users and customers donations and sales. Not one penny has come from begging from the public purse. We hope we can keep it that way, for this way we can support you, the way you need and not jump through hoops to please funders instead of you. ALL our energies are devoted to you.
We keep our prices as low as possible and any excess monies will be re-invested for those who need us.
Recycled books are mainly priced roughly 80% off the recommended retail price and are gathered mainly from USA and UK libraries, though some come from personnel collections. Whilst new books, the majority are roughly 40% off the recommended retail price. Should you find a local bookshop selling at a lower price, without a sale, then we will refund the difference, even though we are likely to make a loss.
The main idea is for Self Help books along with books on various health conditions. At present we do see many students who need high price books and don't mind buying good condition pre-read books for their studies.
We also have many different Adult Colouring, Crossword, Dot to Dot books. So while these are Adult activity books, we know you need something to keep young children busy, so you can have some me time... so we do carry a number of children's books. There are a few Cooking & Baking books, a few Gardening... Want to know what you can cook in the microwave? At present we do have a set of such books with some amazing recipes.
We also have some craft items and books on Cross-Stitch and things like that. But our biggest shown interest is in 3D and 5D embroidery kits, we have expanded our varying stock. We will also search for you on any subject you want. Someone came in and seen our 5D's and seen one of one they bought in Tavistock, they paid £15.99p. They could of cried, for we had the identical item at £7.99p. Next time they are coming to us first.... that way they could of saved £8 or bought two for the same price.
Our pens, pencils, crayons etc.. are all keenly priced.
The need for a Service User Network in Cornwall is already stretching our resources.
We are glad to serve you and to chat to each one of you. This service is open to anyone who needs to chat and if we can help you in your quest.... then great. NO ONE should be socially excluded.
We need volunteers, so we can keep well. So if you would like and enjoy meeting others, come along and join us. It is a great way to meet others who don't judge and can often understand just what you are going through. So come and join the LOVE Generation... no pressure on you... we lookout for each other.
Hope to see you soon...
Ray, Jan & Tina
The aims of the Group shall be to:
1. Education of All Emotional, Mental Health, Autistic, Learning Conditions, Loneliness,
and Age related conditions to service users and the public in Cornwall & Plymouth.
2. Intentional Peer to Peer support for those who would like to commit to become members.
3. Support users to develop self esteem, self worth, confidence and skills.
4. Reducing stigma for all sections of society.
5. Community Builders making our communities better to increase physical, emotional,
mental, educational and social integration.
6. Directing vulnerable persons to the known services.
7. Longer term aim 1., to be able to support those who need respite care.
8. Longer term aim 2., to go into schools, colleges, universities, work area's sharing our stories.
9. Longer term aim 3., to support advocacy for those who require it.
10. Ongoing setting up a network throughout Cornwall and Plymouth.
Mental and Emotional Health support through the eyes
of service users in Cornwall and Plymouth UK
WELCOME ONE AND ALL
Welcome to Service User Network Cornwall and Service User Network Plymouth. Giving you support and information, we research, you can read.
A totally independent friendly site for all service users, peer to peer supporters and carers who live or know someone who lives with Emotional or/and Mental Health issues in Cornwall or Plymouth (UK). We also welcome those with Learning Disablilties (LD), Autism including Asperger's syndrome, Drug and Alcohol, Personality Disorders, Diabetes, Epilepsy, M.E., bullying, Eating Disorders, LGBT, Cross Dressers, Adult Babies, Adult Kids, Reborns, Crafting, Knitting, Embroidery, (including diamond embroidery) Reading, Writing, Mind Wellbeing need to Care-give, Loneliness, Socialising with others and anything else (though it must be legal). FEEL ALONE... no need to, also we are looking for volunteers, so the Network can grow. We want people to know, there are always someone around who can listen and share with.
If you find it hard to survive within this world or you feel like an alien, then maybe this site can support, guide you to support groups and help you to build your own life.
Every single person HAS A RIGHT TO A LIFE, where you are safe and can grow to your maximum capacity. NO-ONE has a right to judge you or bully you.... It's YOUR LIFE and as long as you respect everyone else, then you too should expect to be respected in return.
Well everyone is welcome, but please respect who the site has been primary set up for.
Judgemental people are the only ones we have a problem with, we do realise this is a Mental Health condition. If we can help and support you, then we will.
With so many vulnerable people on the site, can we request, if you suffer with this condition, you are welcome to read, but please do not judge others here. RESPECT is the word, we are not bothered by people's lifestyles or religion, sexual preference, politics, colour, or where they come from, we are all human.
This site has been built and funded by a service user, no outside funding has been used in the development of the site. It is also the first time this service user has tried to build such a site. So if you have any positive criticism, please feedback. Is there anything more that needs adding? We want to encourage intentional Peer to Peer support and information.
Sometimes the service providers, either do not have the funding that is needed or they really do not understand the pain a lot of people actually experience. So it is up to us to try and educate as well as letting them know what our needs are.
Together we are a powerful voice, we can help in many ways to rid the stigma of Mental and Emotional Health.
We have already had requests for both paid and voluntary involvement. We have already engaged with Exeter, Plymouth and Cornwall combined universities, along with other requests. So let us know if you are interested. Also we have been aproached by a Television company to make a programme, interested? Looking for those with all conditions, so do not think "I cannot do that", we will give you the support you need.
It is important to sign up to this site, the information will not be given to anyone else. Only the moderators of the site, who are all checked for confidentiality, will only see names. We welcome positive comments about the services as well as the negative. We also encourage Carers and Employee's to send us their comments.
Please add Service User, Carer, GP, CPN, Therapist, Psychologist, Psychiatrist, Parent, Social Worker or other interest at the beginning of the message. There will never be the passing on of names to anyone else except in the circumstance where someone is either in danger to self or to others.
Cornwall has had a dismal record on Mental and Emotional Health for many years. Most years its in the top Counties for suicide. Adult Social Care and Mental Health services have nothing to celebrate. But neither do the voluntary sector along with much of the set up of service user involvement in Cornwall. In 2005 Cornwall was held up as the way Service User Involvement works. But since then it has collapsed, hopefully someone in authority will reverse this trend. But in the meantime, it's down to us guys, so please sign up and help each other.
Keep safe and share all the good things with others and of course if you need to talk then please share on the Forums..... unfortunately we are also service users, so we cannot give any professional help.
Should you be in danger, then please ring 999 and ask for the police.
There is now a new social media page called Cornwall SUN on Facebook..... come and join us... have your say.... what is your need.?... do you receive the treatment you need? Let us build a Facebook page and encourage service users to speak out and to find the support they need. https://www.facebook.com/sun.cornwall
Information about the site
Do have a good look around, there is something for just about everyone. Contact via: [email protected]
Let me walk you through the site.... Well this is the:-
IN THE NEWS
Events and Activities
LIVE TIME CHAT
Recovery can be different for each person and many ways need to be tried to find the right approach for the individual.
RADIO AND TELEVISION STATIONS
Feeling a little bored? nothing on you TV, then try this page. The first radio player enter any artist and up comes a station with that artists music. The second radio player has ten presets on with some relaxation / new age / uplifting / dance / oldies etc.. But don't need to stop there if thats not your choice, you can go straight to 365 radio and sign up for free and have access to hundreds of stations with all types of music and talk.
If you need a little bit of visual stimulation, then there are links to two providers, between them there are four thousand televison stations from all around the world. There must be something that you like. Though I did say when I first got Freeview, cor! look at this, I use to have five channels of Cr*p, now I have thirty channels of cr*p.
HOW CAN YOU HELP?
Well that is the begining of the site, over time it is hoped that it will just get bigger and better. If you have any idea's of including other things, then do please get in touch.
If you live in other area's, why not set up a similar site for your area. We could develop a whole network throughout the Country.
Thank you for dropping in, do bookmark (Ctrl D ) and revisite often as the site should be on going with many new developments.
Take care of yourselves and your community.
((((Hugs to all))))
OAKLEIGH HOUSE CAMPAIGN
Well one more update today 05/04/19
Laurence Reed from BBC Radio Cornwall, Lunchtime phone in.... (well worth the TV licence fee) copied from our Facebook feed:
Check timings of Oakleigh items below.
LAST UPDATE FOR NOW 4th April 2019
OAKLEIGH HOUSE, MENHENIOT - PRE-CRISIS
Congratulations! To all who have been involved....
Today I can report on a closed meeting held yesterday (Wed 3rd May 2019).
Cornwall Councillors met with representatives from Kernow Clinical Commission Group, to discuss the concerns of Service Users and Re-Gain on the closure of Oakleigh House pre-crisis and respite house.
This meeting was called for at the Health & Wellbeing Scrutiny Committee, at which a reprieve of three months were granted whilst consultations would take place.
Councillor Bert Biscoe, proposed the Commissioning Group come back in three weeks time with proposals for the consultation and time scale. Not one Councillor voted against this.
I don't have any insider information of what happened in yesterday's meeting. I was informed after yesterdays meeting, it was agreed another meeting would be held with the Commissioners, a Councillor and Re-Gain.
I was delighted at 4:00 pm today, on BBC Radio Cornwall's News it was said "agreement had been reached and funding for the next THREE YEARS is guaranteed" Oakleigh House will remain open.
Service User Network Cornwall (suncornwall) would like to thank the Commissioning Group (maybe late in the day) for listening and willing to admit they got it wrong and reverse their decision. Thank you for doing the right thing. Yes most people will recover from mental and emotional health conditions.... but there is also a number of people who have long & enduring issues and need to cope every day of their life. They do not like going into crisis before they get support. One glove does not fit all. Services needs to be tailored to the individual needs and not push everyone into one pot.
Special THANK YOU to Councillors, Jacquie Gammon, Colin Martin, Burt Biscoe, Pat Rogerson, Loveday Jenkin, Barbara Ellenbroek, Jayne Kirkham, Nicky Chopak, Sheila Lennox-Boyd, Karen McHugh. There were others who supported, but I didn't catch your names, so thank you as well. It was great to see a real cross party coalition on fighting this issue. WELL DONE! A great big thank you from all service users.
Outside of the Council, a big thank you to Laurence Reed and all of BBC Radio Cornwall team, without your continuing support it might of been another story. Also thanks to the BBC Spotlight team and Pirate FM along with local newspapers. The media did us proud, especially when we don't usually get heard.
Thank you all those service users who spoke or wrote to the media and political leaders. When we unite we can get our needs fulfilled.
On behalf of suncornwall, thanks to Paul Symons & Ray Hancock for leading the service user responses and constant media contacts.
The biggest Thank You to RE-GAIN and the staff of OAKLEIGH HOUSE, the pain you all had to endure wasn't fair. Your continuing support and loving care, is what is so special about Oakleigh. If only the NHS worked in a similar way, I believe the suicide rate for Cornwall could see a reduction. A BIG SHOUT OUT! TO OAKLEIGH AND ALL CONNECTED "WE LOVE YOU" XXX
Update 16th March 2019
Ray attended the Health & Social Care Scrutiny Committee at Cornwall Council, County Hall, Truro on Wednesday 13th March. There were a number of other service users who also attended.
The Trelawny Room, one of the committee rooms was fairly full with Councillors and other people from other bodies.
Oakleigh House was the 13th item on the agenda and came up around 1:30 pm after lunch. It was a hard day, but it was well worth seeing and understanding the lack of consultation or the understanding of the two who were there on behalf of the Kernow Clinical Commissioning Group (KCCG). Their apologies and excuses were embarrassing.
The problems the KCCG believe is a problem.
1. We get institutionalised.... REALLY???? With the same reality check, anyone in the same job for a year or two, become institutionalised, so they become stale and unable to think fresh thoughts.
2. Oakleigh is serving only a few people.... could be true, for the agreed consultation paper, said six pre-crisis houses with a total of 26 beds would be provided, giving one house in each of the six districts. Only one house has been provided.... that is not the fault of the service users or Regain as the provider. The fault lies with the commissioners, for not releasing the funding as promised, from the money saved by closing down the hospital beds.
3. Safety issues with Oakleigh House. As an ex trained health & safety British Telecom union secretary, I cannot but see and report safety issues. There has been one or two minor issues over the years and these were seen too immediately. There is one outstanding, which is minor, but needs funding, it isn't likely to be a risk to residents or staff. There is also one advisory which isn't a safety issue yet, but in about five years it could become one.
4. KCCG are setting up crisis cafe's..... Porth Eden was running one in Redruth, but ceased because of money in January...? Crasac Cornwall, ending services because funding ceased.... West Cornwall MIND.... gone because of funding.... Penta ceases the end of March because of lack of funding.
The old Social Service day centres are now just about defunked? Staff were withdrawn and service users were expected to run their own services. This turned into the prison type of "Top Dog" mentality... even I was attacked and I went over North Cliffs, for the second time, bushes and trees broke my fall. So though I could go back, I do not feel safe without professional trained staff.
5. Service Users to run Peer 2 Peer groups.... who is going to do the training? What sort of Peer 2 Peer??? I have been in such groups and the strongest voice usually takes over.... Not always the best person to encourage others.
I remember a guy called Ron Coleman who recovered from schizophrenia, came to Boundervean Day Centre in Camborne. Well I tell you what!.... It was like attending a Billy Graham Crusade (I did attend one)? What he was saying, no-one needs pills or day care or professionals... we can all recover if we exercise more and get a job..... It made me feel like total crap afterwards and a failure, for I have been trying hard to recover for decades. I ended up back in hospital.
It was a therapist, who helped me to stop the revolving door of in and out of hospital along with Oakleigh House staff. They all listen to me and hear me without judgement. Also they gave me a truthful statement... Those with Long and Enduring conditions may never recover... but that don't mean it's the end. We will always support you in finding coping techniques and this is what they still do. My medication has reduced and hospitalisation has near ceased... Suicidal and self-harm feelings are still at very high levels along with very high anxiety. But the coping techniques are holding strong, I still am getting support and extra tuition, without it, I do believe I could go back to old behaviours.
I cannot see the financial argument neither, one week in Oakleigh is less than £100.... in Longreach around £1,500 a week... so four weeks at Oakleigh = under £400 compared to £6,000 at Longreach or Fletcher in Bodmin?. People around me comment how good I seem after respite at Oakleigh, the same cannot be the same from hospital, usually I am put on new drugs.
The Government tell us we can go for the treatment which suits the service-user... Well this user needs and want, the non clinical staff of Oakleigh, they seem to understand my complex needs without judgement.
- Don't forget to download the petition Oakleigh House Petition 260219.docx
Please download the paper petition and get all your family, friends, work colleagues, people on public transport. Print and drop off copies in your local shops. The more support we have, the more chance the decision will be reversed and the right out-come will be decided. If you cannot download and print, please use the contact page and give an address where we can send you some copies. The only person to see and store your details in a secure place is the site administrator... Ray Hancock, who will destroy your information once the Commissioning Group has reconsidered their decision in favour of service users needs. Also in the fight to develop the original consultation, which said: Six pre-crisis would be developed, one in each of the District council area's.....
News Update 26th Feb 2019
Latest News: Lib Dems Cllr Colin Martin and Cllr. Jacquie Gammon ......
Colin Martin Today as Vice Chair of Cornwall Council's Health and Adult Social Care Overview and Scrutiny Committee, I "called in" the decision by NHS Kernow to close Oakleigh Sanctuary House
This will be debated at:- NEW COUNTY HALL
on:- WEDNESDAY 13TH MARCH 2019....
THE MEETING STARTS AT 10:00AM.
Jacquie Gammon, Cornwall councillor for Bodmin St Mary's, has requested that the council's health and adult social care overview and scrutiny committee calls in the decision.
As well as highlighting the impact on Oakleigh House Cllr Gammon is also concerned that a Nightlink phone service which is also run by Re-Gain, which operates Oakleigh House, is set to close this year.
It had also been funded by the NHS until 2016 when funding was withdrawn but has continued since.
Nightlink is a confidential phone service which offers out-of-hours support for people with mental health issues.
She explained that she tells clients to use Nightlink, adding: ?In the middle of the night, feeling suicidal, they need to speak to someone and someone who understands.
The Liberal Democrat councillor said that Oakleigh is capable of taking crisis clients and some of those using the service now are in crisis, although the NHS has said people in crisis would not be able to go there and would need the support of their community mental health team worker.
Cllr Gammon said she was concerned that there had not been any consultation with clients or staff at Oakleigh House.
She also said there did not appear to be any information about alternative services for clients.
Thank you for all of those who have had their voices heard so far on radio and television.
Special thank you Laurence Reed for his support and interest in mental & emotional health.
Nice to meet with the Spotlight team at Oakleigh, whilst in respite.
Our campaign hasn't started yet, like most of you, it was only through Radio Cornwall, this issue was brought to the general public. Staff of the Foundation Trust and anyone connected with it, were gagged. The plan was hatched just before Christmas, but all was told to keep quiet.
It has been said, CPN's were told not to tell any service user about what was happening. Even those from next week, who are booked to go into Oakleigh House. If anyone who turns up without knowledge of the close down are expected (they will not be told) to contact their CPN and the CPN will inform them to take a taxi back home.
At present this has been expressed by a third party source. Could a CPN or someone with authority please either confirm or deny this.
Please add your name to the petitions:-
Combined signing so far over 1,500 in three days.... Please sign both and do read what others are saying about Oakleigh, including senior Cornwall Foundation Trust staff...? whilst the CEO seems to not understand anything about social interventions... He says:- I had in becoming a Foundation Trust Chief Executive and ensuring that we maintained our high performance, delivering a surplus...?.
Devastating service whilst delivering a surplus is not something to be proud of. This shows bad management skills, unless there is some kind of bonus in creating surpluses... then this is immoral.
OAKLEIGH HOUSE CLOSURE
Distressing news have been reaching service users of a emotional / mental health respite facility.
The over subscribed respite home, has been a life saver for thousands of service users over the years. Many of the guests were revolving door patients of acute mental health hospitals.
Oakleigh House has been a resounding success for service users in Cornwall.
Once upon a time, Cornwall mental health service users were the envy of the rest of the UK. It had a really active service user representative group (SURG) and led where many other groups followed.
It wasn't just a talking shop but a very active body, it was listen too by Social Services and The old Primary Care Trust and Cornwall Mental Health NHS. Services users sat at the top tables of all decisions affecting services, even sitting on the interviewing board for staff at all levels.
Through this process, one of the biggest shouts were for a respite care facility as an alternative to having to spend time on a psychiatric ward. If your going through a rough time and not able to think straight, a stay in hospital is the last place you want to be, especially if there are very disturbed patients on ward.
Over the last few years mental health services have deteriorated in Cornwall to a miserable state of affairs. Staffed Day-Centres have ceased, unless people are there to attend a structure course, or drop-in can be run by the service users. This can put people at high risks, without the back-up of trained staff to intervene in crisis resolution.
There were also Service User led drop-ins, but these were cash starved and the poultry sums involved, saved the tax payer a lot of money. Helping those who needed to just talk through issues the chance to do this without going to hospital.
Oakleigh House accommodates five guests at a time, including a ground floor room for anyone with mobility issues. The staff are all very intuitive and can empathise with the guest who maybe experiencing a lot of emotional / mental pain. This is because staff are selected by them their selves, have or still have some of their issues. This enhances their ability to treat guests with total respect and non-judgemental, no matter how the guest are. The staff dedication is second to none of those who I have known throughout a lifetime of issues.
I will write again in a couple of weeks time. But in the meantime, if you are affected, please make contact with SUN via the CONTACT page.... I guess most who are allowed to go to Oakleigh, have this on their care plans.... What has been put into your Care Plan to make sure you still get respite, I know how much it is needed, I don't fancy going to hospital again.
Also are there any service users who have been consulted on this backward move?
In the same time frame Penta ( remnants of West Cornwall Mind, was hosted by Pentreath Industries)
hasn't received any funding, so service users in Camborne, Helston & Penzance are all left high & dry.
Service User Network Cornwall open our doors to all those who are left without support. We cannot advise, but together we can support each other, we are not funded, nor do we have the energy to chase funding... This is SERVICE USERS DOING IT FOR THEMSELVES... A lot of us are in this position because we were abandoned or let down when we were young.... Well SUN don't rely on others, we do it for each other.
Take care of yourselves and others who need it... looks like we are on our own.
Once I have the full facts, I will keep you informed and look at a massive campaign throughout Cornwall.
Well done to those who phoned into Laurence Reed on Radio Cornwall 12 noon to 3:00pm on Friday.
Laurence is going to try and get some answers and will be on today (18th Feb) with a special programme regarding Oakleigh... But please do call him if you have lost any support or services. We are receiving many calls from people in crisis. The worse one so far, someone who says they were in hospital with an overdose back last November and are still waiting for an assessment from the Community Mental Health Team.. This isn't good enough, no one would put up with it with a physical health issue.... NEITHER WILL WE....