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!
Matthew McKenzie covered this meeting for us. He did an excellent job!
YouTube video blog: http://youtu.be/2AVu7cP-diI
Transcript of audio and video blog: http://www.scribd.com/doc/205460760/Hear-Us-Open-Forum-Meeting-4th-Feb-2014
Thank you for doing such a great job Matthew!
CoolTan Arts invite you to take part in the public consultation on the future development of the site of our old premises at 237 Walworth Road.
When planning was granted at this site it was on the prevision of a section 106, with CoolTan Arts as the named recipient. This meant that the developer promised include an allocation for community space in any new development.
Currently the proposed planning application is for a shared housing development, something which doesn’t include the promised facilities.
We believe it is vital that any new development must include the promised community space for CoolTan Arts. The Walworth Road needs to have public community spaces, places that provide skilled employment and wages above the minimum wage, allowing people a respectable standard of living. We believe that the area should not be taken over by expensive housing developments at the expense of other facilities and needs.
CoolTan Arts has developed a petition about this and will be contacting the council in Southwark and all our MPS, please add your name: http://www.ipetitions.com/petition/cooltan-arts-community-space-for-237-walworth-road/
Goldcrest the developer is inviting local residents and businesses to a public exhibition to view the proposals on Thursday 24th October between 12pm and 8pm at Chatelaine House, 186 Walworth Road, London, SE17 1JJ.
CoolTan will be attending the meeting between 1-2pm and invite you to join us then to have your say.
If you cannot attend the meeting Goldcrest invite you to share your views by either email: firstname.lastname@example.org or by writing: Walworth Road Consultation, FREEPOST RSBX-ARER-CTYA, Your Shout, The Old Marmite Factory, 1-45 Durham Street, London, SE11 5JH.
You can also contact Southwark Council: Southwark Council, PO BOX 64529, London SE1P 5LX, 020 7525 5000, email@example.com
An audio blog by Matthew of the event at Lambeth Accord on 23 September 2013.
This event was organised by Disability Advice Service Lambeth.
The evening included short presentations on local disability history projects.
It also included presentations by Lambeth Mencap, Carers Hub Lambeth and the Allfie Project.
This blog is really interesting – it relates some of the history behind how organisations such as Mencap started.
It is World Alzheimer’s Day today – 21st September 2013.
An audio blog by Matthew to remind us what an important day it is. Great blog about events happening around the world today and for the whole of September (World Alzheimer’s Month). Useful links to websites for extra information.
Well done Mary, Gill, Sheila, Abigail and Storm!
By Ned Simons
The UK Statistics Authority (UKSA) has written to the work and pensions secretary to tell him the claim was “unsupported by the official statistics”.
Duncan Smith recently defended the coalition’s welfare reforms by arguing “already we’ve seen 8,000 people who would have been affected by the cap move into jobs. This clearly demonstrates that the cap is having the desired impact”.
The statistics agency investigated the claim following a complaint by the TUC. In a separate letter to the union, Andrew Dilnot, the chair of the UKSA, said Duncan Smith had not complied with the code of practice for official statistics.
“In the manner and form published, the statistics do not comply fully with the principles of the Code of Practice, particularly in respect of accessibility to the sources of the data, information about the methodology and quality of the statistics, and the suggestion that the statistics were shared with the media in advance of their publication,” he said.
It is not the first time a senior government minister has been rebuked for mis-representing statistics. In February David Cameron was reprimanded by Dilnot for falsely claiming Britain was “paying down Britain’s debts”.
Full Text Of Andrew Dilnot’s Letter To Iain Duncan Smith:
Dear Secretary of State DEPARTMENT FOR WORK AND PENSIONS STATISTICS
9 May 2013
I have today replied to a letter from Nicola Smith at the Trades Union Congress regarding the recent publication of statistics about the benefit cap, and a copy of my reply is attached.
We have also considered the two short statistical reports published on 12 April against the criteria that the Statistics Authority has published for identifying material that should be regarded as official statistics and published in accordance with the Code of Practice for Official Statistics.1 These criteria are in essence that the statistics are used publicly in support of policy, or otherwise are seen to be of public significance. Clearly, the statistics in question qualify on both grounds.
In the manner and form published, the statistics do not comply fully with the principles of the Code of Practice, particularly in respect of accessibility to the sources of the data, information about the methodology and quality of the statistics, and the suggestion that the statistics were shared with the media in advance of their publication.
In March, when considering a complaint about the handling of statistics on child support, I was told that senior DWP officials had reiterated to their staff the seriousness of their obligations under the Code of Practice and that departmental procedures would be reviewed.2 The Board of the Statistics Authority would welcome further assurance that the working arrangements within the department give sufficient weight to the professional role and public responsibilities of statisticians.
I am copying this to Dame Anne Begg MP, Chair of the House of Commons Work and Pensions Select Committee; Bernard Jenkin MP, Chair of the Public Administration Select Committee; Sir Jeremy Heywood, Cabinet Secretary; Robert Devereux, DWP Permanent Secretary; and to Jil Matheson, the National Statistician.
Andrew Dilnot CBE
#RT via http://www.huffingtonpost.co.uk
Please could you post the new Benefits Justice flyer with updated info for Croydon meeting on 30th May as well as the Bromley meeting on 13th May
Please could you post the flyer for ther Disabled People Against Cuts (DPAC) benefits justice meeting in Penge on 13th May which will hopefully explain (although definately not justify) the cuts and tell people some of the actions they can take to oppose them or where to get help dealing with them.
Flyer here: BENEFIT CUTS
There will also be a meeting in Croydon on 30th May the details of which are yet to be finalised
Have you ever been physically restrained or had to intervene and restrain someone in a mental health care setting?Posted: April 17, 2013
In June, we’ll be campaigning for an end to face down restraint, and the establishment of national guidelines and better training to care for people who are highly anxious or experiencing panic.
If you’ve experienced physical restraint or had to physically restrain someone in a mental health care setting, and would like to share your story, please email firstname.lastname@example.org
Your story can help us to campaign for change but we’ll always treat your experience with the sensitivity it deserves.
We call for a Cumulative Impact Assessment of Welfare Reform, and a New Deal for sick & disabled people based on their needs, abilities and ambitionsPosted: April 4, 2013
We call for:
A Cumulative Impact Assessment of all cuts and changes affecting sick & disabled people, their families and carers, and a free vote on repeal of the Welfare Reform Act.
An immediate end to the Work Capability Assessment, as voted for by the British Medical Association.
Consultation between the Depts of Health & Education to improve support into work for sick & disabled people, and an end to forced work under threat of sanctions for people on disability benefits.
An Independent, Committee-Based Inquiry into Welfare Reform, covering but not limited to: (1) Care home admission rises, daycare centres, access to education for people with learning difficulties, universal mental health treatments, Remploy closures; (2) DWP media links, the ATOS contract, IT implementation of Universal Credit; (3) Human rights abuses against disabled people, excess claimant deaths & the disregard of medical evidence in decision making by ATOS, DWP & the Tribunal Service.
This e-petition has received the following response:
As this e-petition has received more than 10 000 signatures, the relevant Government department have provided the following response:
Cumulative impact analysis is not being withheld – it is very difficult to do accurately and external organisations have not produced this either.
The Government is limited in what cumulative analysis is possible because of the complexity of the modelling required and the amount of detailed information on individuals and families that is required to estimate the interactions of a number of different policy changes. In addition, the Government’s programme of welfare reform will not be fully implemented until 2017/18 and many policy details are still to be worked through. Equality Impact Assessments are however carried out for individual policies where there is a requirement.
No other organisation produces this analysis in a robust way. The Treasury does publish some cumulative analysis with each Budget but this is a broad brush assessment of all tax, benefit and expenditure changes since 2010 across households. Because the Budget cumulative analysis is so complex, it is not robust enough to break down by family type – so impacts on disabled people cannot be shown separately.
The IFS also produces some cumulative analysis but also do not feel the results are reliable enough to disaggregate for the disabled.
This e-petition will remain open to signatures until the published closing date and will be considered for debate by the Backbench Business Committee should it pass the 100 000 signature threshold.