I have been a carer consultant on the Involvement Register since May 2011. I have thoroughly enjoyed this – I’ve been involved in the Food Project, on the Psychological Medicine Service User Advisory Group, visited the Mother and Baby Unit, given presentations for SUITE (Service User Involvement in Training and Education) and also have had a lot of responsibility for SLaM TWIG Ops Facebook page https://www.facebook.com/SLaMTWIGOperations and our twitter feed @slamtwigops helped and supported by Matthew Mckenzie – particularly when I have been unwell.
An Involvement Register colleague, D Rosier, saw a post that I had done on my personal Facebook page and kindly suggested that I do a blog post in order to raise awareness.
I was diagnosed with breast cancer when I was 44 in 2005 and underwent a lumpectomy and radiotherapy. My oncologist told me that I was very unlucky to get it at a relatively young age. My prognosis then was that it was less than 5% likely to reoccur. Last October though the beastie raised its ugly head again and I had a recurrence. Now buying lottery tickets as I keep falling in the unlikely stats so surely I must be due for the unlikely event of winning the lottery! 🙂
This time I have been throwing a lot more at it – bilateral mastectomy, chemo, Herceptin, Letrozole… I have no intention of doing it for a third time.
My lovely son, Chris, has been supportive all through this. Spending time visiting me in hospital, bringing very posh champagne for New Year (bizarrely when you are going through chemo champagne tastes particularly good!), coming to keep me company whilst being filled with toxic drugs (chemo) at an unearthly hour just after Christmas, numerous treats of lunch out – to name but a few things. Typical of my son not only does he want to be supportive but also wants to do something practical to help – and if that involves some crazy sports challenge so much the better!
Chris is doing an ultra marathon at the end of June for Breakthrough Breast Cancer Research http://www.breakthrough.org.uk/ . This is a 100km run (62 miles – more than 2 marathons) which is phenomenal distance to run in one day. It’s along the Grand Union Canal starting at Maida Vale, Nr Paddington and ending in Bletchley, Bucks. You can’t simply just get out of bed on the day and hope to run this far – it involves a huge amount of training. Chris often runs 20 miles after a full (and long)day’s work purely to train for this and aims to run 60+ miles per week to keep superfit. He has trained whilst in Kuala Lumpur on a business trip in extremely hot weather. On 7th April he ran the Brighton Marathon in three hours seven minutes purely as a “training run”. I am so proud of him.
Research is vital. Breast cancer is really sneaky – it has a habit of reappearing several years later when all appears to be well – which is exactly what happened to me. Research is coming along and purely because of good research I will benefit this time from a new “wonder drug” Herceptin. This was a very new drug when I was first diagnosed in 2005 and not widely used. Recent research has shown that even though my cancer was contained I will still benefit immensely from it. If it wasn’t for research this drug would not be available and I wouldn’t have the excellent prognosis I have now.
Chris’s JustGiving page is http://www.justgiving.com/CJ-runs-a-long-way Please take a look just to raise awareness and if you feel like donating too then even better! No donation is too small. All the bits add up!
Review & Proposals for changes to The Patient and Public Involvement (PPI) Trust-Wide Internal Structure & The Involvement RegisterPosted: October 1, 2013
Review & Proposals for changes to:
The Patient and Public Involvement (PPI) Trust-Wide Internal Structure
The Involvement Register
Summary of Key Changes:
South London and Maudsley Mental Health Foundation Trust is reviewing its Trust-wide Patient and Public Involvement Structures. We want to hear your views on them.
The key proposed changes are:
- The introduction of a new Patient Experience Group with responsibility for overseeing and co-ordinating all PPI (public and patient involvement) activity in the Trust. Trust Wide Involvement Group (TWIG) – Operations and the Trust Wide Involvement Group (TWIG) will be absorbed in to this group. Local CAG Service User Advisory Groups (SUAGs) activity will not be affected by these changes although the development for the new PEG governance should improve Trust wide effectiveness of the CAG’s SUAGs.
- Improvements to the Involvement Register to make it more efficient and to open up opportunities to more people. The key changes are:
- A tightening of the criteria relating to people who are suitable to join the IR
- Clearer definitions on what activities will attract payment via the IR
- Individuals will be allowed to work up to 30 hours a month limit via the Involvement Register. This will not affect most IR members.
- Introduction of two payment rates – £10 an hour for most activities and £15 an hour for more complex work such as chairing meetings.
- To review members every 2 years to assess support and developmental needs.
- Every 2 years review the membership of internal service user and carer meetings. For example, the tenure of Chair or Co-Chair should be assessed every 2 years.
- Strengthening of the support and supervision provided to people on the involvement register
- Developing the availability of training and our links with the recovery college
- Increased signposting to other opportunities such as volunteering and employment opportunities.
- PPI initiative to enable staff across the trust to understand and utilise the re-development of Real Reward and Recognition policy.
These recommendations are first and foremost as a direct result of The Francis Report (2013). However, these recommendations are influenced from a number of engagement/ consultation focus groups with service users, carers, and staff over a considerable period of time, which includes informal discussions and anecdotal evidence from all parties. In principle, the recommendations have been agreed by the Trust Executive following an engagement process
For more detail, please read the full Public and Patient Involvement document. This can be accessed on the SLAM website and the TWIG Ops Blog.
We would now like to hear your feedback. You can do this in the following ways:
– Attend our feedback event on Thursday 14th November, Ortus Centre, 10-12 followed by lunch. Book your place by contacting Mariana Bakewell (Tel: 020 3228 1667/ PPITeam@Slam.nhs.uk)
– Send your written comments to Dr Ray Johannsen-Chapman (Strategic Lead for PPI),
– Talk to one of the PPI Leads – contact details are below.
The dead line for feedback is Friday 22nd November.
Full document here as PDF: ThePPIIRReview-1
Above summary here as a PDF: SummaryPPI&IRReview-1
Service user and carer advisory group – mental health services for mood, anxiety & personality disorder – March summary of discussionsPosted: April 6, 2013
The Service User and carer Advisory Group is part of the Mood, Anxiety & Personality (MAP) Clinical Academic Group – an organisational structure which manages services for mood, anxiety & personality disorder across the South London & Maudsley NHS Foundation Trust (SLaM). The Advisory Group members have experience of using mental health services or are family members or carers of people who do. They meet every month and work with the senior management of the mood, anxiety & personality disorder services to keep the views of service users at the heart of all service developments and improvements.
I have attached the briefing from the March MAP CAG service user/carer advisory group meeting – this summarises the discussions that were held.. Please do print off and make available to service users/carers/user groups etc.
1)Four service user consultants were present at the March meeting, plus the Public & Patient Involvement (PPI) Lead, the clinical governance project officer, MAP services managers from Croydon and Southwark and the Strategic PPI Lead for the Trust. Apologies were received from 3 members.
2)We heard that, following the recent recruitment exercise 11 new service user/carer consultants would be joining the group. We discussed the introductory meeting to be held in April and agreed that it was important not to give too much information ,and to give people an opportunity to get to know each other.
3) We heard about the plans to take forward the review of the involvement register and highlighted the need for service user consultant representation on the management group overseeing this work. We also noted the importance of developing pathways through involvement and good support systems for those people who are regularly undertaking involvement work.
4) We heard about a new piece of work to improve the experience of people in reception areas. One of the new members of the advisory group is working with the clinical governance project officer on this.
5) We discussed the importance of giving a clear message to people using psychological therapy services about when information may need to be shared if there is a risk to self or others. We agreed that this could be taken up in more detail by the psychological therapy teams patient information working group.
6) A member fed back about the plans of the psychological therapies service user experience group to hold a focus group to check out their proposed quality indicators and some formats for questionnaires.
7) The Centre for Anxiety Disorders and Trauma have asked for support in running a focus group to explore their satisfaction survey results. A member of the advisory group will be co-facilitating the focus group.
8) We heard how the MAP community teams in Croydon were gaining feedback from the Hear Us linkworkers and satisfaction questionnaires. We suggested that they run a service user forum to get ideas about how this feedback can be turned into improvements. Members of the advisory group would be happy to assist. We also highlighted the importance of letting people know the outcome of satisfaction questionnaires.
PDF version here: Briefing Sheet Mar 2013
With best wishes,
Patient & Public Involvement Lead – Mood Anxiety & Personality CAG and Psychological Medicine CAG
email: email@example.com tel: 020 3228 0959
113 Denmark Hill |The Maudsley Hospital | Denmark Hill | London | SE5 8AZ
I have been working on the SLaM Involvement Register for about 18 months.
I have been on Incapacity Benefit since 2005 and a few months ago I received a letter saying that I would now be put on ESA. I had to fill out the long ESA forms going through my medical history and what I was able and not able to do.
I then received a letter from DWP saying that I had been placed in the ESA WRAG (work related activity group) and that I would be called for an work-focused interview.
The dreaded brown envelope arrived with my appointment shortly before Christmas. I thought the tone of the letter was unnecessarily harsh – stating that as I was in the WRAG I had to attend work-focused interviews and that I may also have to carry out work-related activities if the adviser thought that it would help me to be able to return to work in the future. The letter also stated that if I didn’t attend then my benefits may be reduced – termed a sanction.
I went along with some trepidation this morning – I was lucky though, I saw a sympathetic adviser who had recently been off work on sick leave and was understanding and empathic about the problems relating to returning to work if you are unwell.
Points that were made to me:
- Whilst on IB “supported permitted work” is allowed to continue indefinitely but the rules for ESA WRAG are slightly different. Generally speaking you can only do “supported permitted work” for 52 weeks but this is on an individual basis and can be extended if the adviser feels that this is appropriate.
- In my case I will have to attend the JobCentrePlus every 3 months to see how I am.
- Apparently most people in the ESA WRAG group are automatically put into the Work Programme. There is heavy pressure on the JobCentrePlus staff to take this course of action.
- It is extremely difficult to get transferred from the WRAG group to the Support group. I was told the fact that I was doing work – albeit “supported permitted work” meant that my chances of getting the decision changed were virtually nil – I had already proved that I was able to work.
- I was told that the rules could be changed at any point and that in the future my case could be looked at differently.
I explained to the adviser that working on the Involvement Register meant working in a therapeutic and supportive environment. I emphasised that people on the IR are often not well and are therefore treated with understanding and care. I said that there was no pressure to attend or turn up to any work and indeed that even if you feel unwell at the last minute it is accepted and understood that you won’t go. I also said that if you work one week for a few hours it is not necessarily assumed that you will be well enough the following week to work. I said that on a personal level being on the IR had increased my confidence and that I had been able to learn new skills – all done at a pace that suited me. I mentioned that I had been involved in running focus groups and that I had also in doing work from home such as reading and commenting on reports etc – which could be done quietly and in my own time.
The adviser felt that in light of the positive experience (including learning new skills) I was getting from the Involvement Register that he would not put me into the Work Programme. I do think the fact that I was able to state how supported I felt on the IR and that I was learning new skills really helped. I also strongly stressed the supportive nature of working on the IR and how understanding people are if you are having an “off day”.
I think, unfortunately, that a lot will depend upon the JobCentrePlus and the nature and understanding of the adviser that you see but I hope that some of the points I have mentioned will be of some help.
Croydon Promoting Recovery Psychological Therapies Service: experience of psychological therapy for psychosisPosted: December 10, 2012
The Croydon Promoting Recovery psychology service piloted a focus group as a method for more systematically finding out from service users about their experience of having psychological therapy.
A detailed proposal was developed and feedback sought from service user consultants recruited from the SL&M service user involvement register. The proposal was approved by the Psychosis CAG clinical governance committee.
Service users who had received therapy within the previous 12 months were invited to discuss their experience of having psychological therapy (on the assumption that 6 -8 would attend). Invitations were sent as a personal letter and followed up by phone contact.
The focus group was facilitated by two service user consultants, Garry Ellison and Bridget Jones, who had training and previous experience in running focus groups. Service users who attended were given £10 M&S vouchers to thank them for their time in attending the group.
Twenty six service users were invited of the 36 who had completed a course of therapy in the previous 12 months. Service users weren’t invited if they had received therapy from the head of service who was coordinating the pilot as the service user consultants advised this might raise concerns about participating. Service users were also excluded if they were currently in hospital, if there were current risk concerns or if they had moved out of the area. Of the 26 invited, 4 responded to say they would attend and 2 people actually attended on the day.
Participants were offered a copy of the findings of the pilot group and all those who attended chose to receive this report.
The report was prepared by Sarah Dilks after review by service user consultants Garry Ellison, Bridget Jones and D Rosier.
For those of you who are on the involvement register, volunteers or linked to other organisations, I thought you may be interested in some of this health promotion training which is free to nhs, voluntary & statutory workers in Lambeth or Southwark who wish to develop their formal or informal health promotion role.
Application form for the courses is at the back of the brochure. Any questions, please liaise with them, I am just passing the message on!
Changes to rules for people in the WRAG group of ESA: effect on people working on the Involvement Register (supported permitted work)Posted: December 3, 2012
Please see the attached letter to SLaM, sent today, on behalf of TWIG Ops.
Information on supported permitted work as requested :
This is work done under the supervision of a person employed by a public or local authority …..etc. There is no limit to how long you can do this type of permitted work, provided your earnings are no higher than £99.50 [per week].
The attached Factsheet from Disability Rights UK is very good. Disability Rights UK Factsheet permitted work
There will be an increasing number of people on Jobseekers Allowance as Disability benefits become harder to claim.
There is no permitted work under JSA (as permitted work is for people who are sick or disabled) but there may be other work (less than 16 hours) that can be undertaken depending on individual circumstances. Best to get advice.
Hope this is helpful.
Welfare benefits Coordinator