Working to support the spinal cord

injured community

 

News

Welcome! Check out some of the things I have been most recently involved in. You can also follow me on my Facebook profile for Focus Forwards.

 

 

2018

 

11th Dec - the National Spinal Injuries Centre hold their newly formed patient/management forum meeting which I am invited to attend.

1st Dec - It is SIA's AGM followed by trustee meeting at their Milton Keynes offices. I am appointed Senior Vice Chair by my peers for the forthcoming year. 

2nd August - I attend the National Spinal Injuries Centre patient forum with managers. Bed closures are a key issue and one of great concern to those of us attending. 

14th June- I'm invited by Bolt Burdon Kemp to join a pannel of judges and decide who is the worthy winner of a design competition. College students are invited to design something that will better help the lives of people living with a spinal cord injury. There are some great ideas to consider.

6th June - Attending the wonderful SIA Rebuilding Lives Awards lunch at the Williams F1 HQ in grove, Oxfordshire. It is one of my favourtie calendar events celebrating all that so many do to support the SCI ommunity. 

27th/28th May - It's the Bank Holiday weekend and I open my garden and run a garden quiz to raise money for SIA. Who should show up but our present Prime Minister, Theresa May. She particpates in the quiz and I am able to introduce her briefly to the work that SIA do.  

22nd April  - It's the London Marathon and I go to support all the SIA runners cheering and shouting on Birdcage Walk.

3rd April  - I'm invited to ge a guest speaker as part of Dogs for Good at Newbold College, Oxford. My talk describes how as a spinal cord injured person living with no hand function I came to acquiring Vann and the value he adds to my life.  

 

10th March - It is the first SIA Trustee meeting of the year. It is a long but productive day. 

13th February - I visit the Wheelpower HQ at the Guttman Stadium at Stoke Mandeville for a meeting. It takes me back to when I used to go there as part of my rehabilitation when at the spinal unit! 

 

2017

18th November - It is SIA's AGM and Michelle Howard steps down as Chair and Rupert Earl picks up the reins. After there is a trustee meeting. It is a full day. 

10th November - I am filmed for a short piece of movie for Bolt Burdon Kemp as they look at all the adaptions I use to live my life each day. I did not realise I had so many. It is all in prepapration for a competition they are going to run. 

19th October - I'm visiting the HQ for Dogs for Good in Banbury to meet their puppy socialisers and talk about my partnership with Vann as a disabled person. 

6th June - The SIA Rebuilding Lives Awards lunch is being held at the F1 Williams Conference Centre in Grove, Oxfordshire. Congratulations to all the nominees and winners alike. 

20th May - Another quater has passed and it's time for a SIA Trustee meeting. Milton Keynes here I come.

27th April - I'm in Liberpool visitng the home of SIA Healthcare to meet staff and see the fullfillment centre in action. It's busy, busy, busy!

3rd April - Time to return to Elstree Studios and the Eastenders set to help with rehersals today. It's a whole new world for me but people are so interested to learn about living life with a spinal cord injury.  

9th March - It's the evening of the SIA Energy Quiz. Time to don my glad rags and head for London. It is a successful evening and a lot of fun. 

7th March - Vann and I are at Elstree Studios working with a cast member of Eastenders who is portraying someone living life with a spinal cord injury. 

8th January - I am finally in a working partnership with Vann, my new assistance dog from the charity Dogs for Good. It is an exciting but daunting day! It may be sometime before I post news again.

 

2016

 

 

13th December - The last SIA Energy Quiz planning meeting of the year. The evening is shaping nicely!

12th November - It is SIA's AGM which is followed by a trustee meeting; a busy day!

25th October - I am invited to participate in a patient representative meeting at my local GP surgery. It has recently undergone a CQC audit which is availabe for comment. I am keen to get my point across about building access, given my lack of hand function, needing to be improved. I believe they are listening...time will tell!

13th October  - In my capacity as a SIA Trustee I visit SIA House for meetings and have a chance to catch up with some of the hardworking staff - always a pleasure.

6th October - I attend a Stoke Mandeville Spinal Unit User Forum Meeting. It is always interesting to hear what plans are afoot with peer support coming in to focus.

15th September  - SIA are planning another Quiz evening for 2017 reaching out to the wider Energy Sector. Discussions begin with a meeting at SIA House with the fundraising team. It should make for an exciting evening.

13th August - It's another full day in Milton Keynes at SIA House for the third General Council meeting of the year.

26th May - Dailing in to a tele-conference at NISIC as a patient representative in support of a research project looking into women's issues following a SCI. It is an area of research that has never received much attention and am deliughted this is being addressed and I've been invited to be part of it. 

14th May  - Am interviewed by Bard Care about living with a spinal cord injury, with a special focus on travel and relationships. 

14th April  - It's the second General Council meeting of the year and a busy day at SIA House in Milton Keynes.  

28th April - I attend a User Forum meeting at the National Spinal Injuries Centre. This is a forum where Trust staff meet service users to exchange ideas and learn of new intitiatives. 

20th April - In the interests of looking after my own health and endeavouring to maintain my walking I have a gait lab assessment at the Oxford Centre for Enablement. What an interesting experience! 

12th April - Visiting SIA House for meetings.

10th March - All in the interests of raising vital funds for SIA I attend the Oil and Gas Gala Quiz evening in London persuading my husband and son to join the event too. The quiz questions never seem to get any easier year on year! 

8th March - Visiting the House of Commons today to attend the APPG meeting for SCI in support of the launch of SIA's campaign Strike A Cord. This year the UK's spinal units come under review. Increasingly SCI people are finding harder to access the specialist services they offer. SIA are keen to ensure that all SCI people have access to these specialist services when they need it. #StrikeACord 

13th February - It's off to SIA House in Milton Keynes for the first trustee meeting of the year.   

12th Jan and 9th Feb - I dial in for another meeting to discuss preparations for the Oil and Gas Quiz evening in aid of SIA.

1st January 2016 - Happy New Year to all who visit Focus Forwards.

 

2015

8th December - Work continues to prepare for the Oil and Gas Quiz to be held in March Some lovely prizes are being donated for the evenings raffle already.  

14th November - It is SIA's AGM to be followed by a GC trustee meeting. In the evening my husband and I are invited to join the Rooprai Spinal Trust Gala evening at Luton Hoo. It's a busy day and fantastic evening.

10th November - IMechE, London are hosting a conference Incontinence: the Engineering challenge. I am invited as a panel member to discuss the issues females have regarding bladder and bowel incontinence. As a big issue for those of us with a SCI I am pleased to speak up.  

13th October - The Millennium Hotel, London will be the venue for the 2016 SIA Oil and Gas Quiz evening. Plans are shaping nicely.

23rd September - Back to Milton Keynes, SIA House for a staff and trustee working group meeting.

8th September -  Preparations begin for the 2016 Gala Oil and Gas Quiz evening; it's never to early to start planning!

15th August - At SIA house for a quarterly GG meeting for trustees and senior management.

23rd July - Time to return to SIA House for meetings in my capacity as a trustee.

15th July - Today NSIC host the Anniversary Schwartz Round of which I am a panellist. I share three personal stories of my time in rehabilitation when I believe I received the best of compassionate care.   

8th July - I am invited by NSIC to be one of three panellists that present for the Schwartz Round they are to hold for staff to attend. Compassionate Care will be the theme. Today is a pre-meeting to learn more. I also have a few moments to meet the newly appointed research director, Dr Julian Taylor, for Stoke Mandeville Spinal Research and share some thoughts.

30th June  - Visited Medical Detection Dogs and met with Dr Claire Guest (CEO), staff and dogs! I was very keen to learn more about their work and what opportunities may exist in this arena to support the SCI community.  

8th June - I attend the Patient User forum at NSIC with senior management and nursing staff giving an update on 'things on-going' at the spinal unit.

4th June - It is the SIA Rebuilding Lives Awards evening held in Birmingham. What a wonderful evening to celebrate with and thank so many for all they do in support of the SCI community. All the nominees are winners in my eyes.

1st June - I write to my local MP to invite them to attend the forthcoming SCI APPG meeting to be held in the House of Lords later this month. Have you written to your MP to ask them for their support? 

16th May - ...and it's back to SIA House for a day of GC meetings.

12th May - I visit SIA house for meetings in my capacity as a trustee.

1st May - I visit the West Berkshire Therapy Centre in Thatcham to review the possibility to use their gym equipment with their in-house physio. I come away so 'fired-up' as I can use with assistance more equipment than I thought would be possible. We need more facilities like this around the country!

24th/25th April - It's up to Loughborough for a Back Up Trust mentoring development training day. It is so valuable to connect with other mentors and share experiences.

5th March - SIA host their annual gala Oil and Gas Quiz in the shadow of St Paul's cathedral. My husband is invited to speak about his perspective of living with someone who has a SCI.

26th February - Attend a SPIN (Spinal Patients Involved) session at NSIC. Imogen Cotter gives a very good talk on Managing Chronic Pain following an SCI.

20th February - Invited to visit the Royal Society of Medicine, London and attend a series of lectures the key one being 'Medical assistant dogs in oncology', given by Dr Claire Guest, CEO for Medical Detection Dogs.

14th February  - Back to SIA House again for a GC Trustee meeting.  

5th February - It's off to SIA House today for meetings in my capacity as a trustee. 

27th January   - The SIA Oil and Gas committee meet again and the evening continues to shape with some great raffle and auction prizes donated.

13th January - Sadly the CEO to SIA passed away just before Christmas. it is his funeral today but I am under the weather and can not attend. Sincere condolences are sent.  

6th January 2015 - The new year is underway and there is a committee meeting to keep the SIA Oil and Gas Gala Quiz evening on  track. It is a challenge this year given the reduced oil prices but we are not defeated! 

 

2014

9th December  - I meet with my dog trainer. My assistance dog is reluctant to load in the car and I need help and fresh ideas. It is also an opportunity to meet with two others who were training in Banbury with me at the same time with their new assistance dogs. It's so heartening to learn I'm not the only one with training 'issues' and it's good to share ideas and follow everyone's progress.

5th December - I visit Odstock Medical Limited at Salisbury hospital for a FES foot-drop assessment. A small but significant gain can be had but I am unable to manage the equipment myself given my poor hand function. I need to investigate what else is 'out there'.  

2nd December  - Another Oil and Gas Committee meeting. Some great raffle and auction prizes have been donated for the event and the tables are beginning to sell. 

1st December  - I'm at Stoke Mandeville spinal unit for a Patient user forum meeting with the management organised by Melissa Swinkels, the Patient Liaison Officer.

24th November  - A tele-meeting with the Stoke Mandeville Research Foundation as a PPI representative. Following a generous legacy from Ann Masson funding is available for research. Expressions of interest have been lodged and I have been invited to review some of these from a patient perspective. 

15th November - It's off to Milton Keynes and SIA House for a General Council meeting. Always good to have a few new Trustees on board with new ideas to bring to the table.

4th November - ....and it's another SIA Oil and Gas Quiz committee meeting.

27th - 31st October - I'm in Banbury at the Frances Hay Centre for Dogs for the Disabled on a residential course and in partnership with a golden retriever who will become my assistance dog. There is so much to learn. I hope I can be taught.

22nd October - I'm invited to join Anne Diamond at the BBC Radio Berkshire studios to talk about the previous nights Panorama programme. Following surgery to his spinal cord a Polish man is now walking. The research was in part funded by the Nicholls Foundation under Professor Raisman of UCL. Let's say I'm cautiously optimistic. It a great break through for neuroscience but a long way from offering real benefits to the wider SCI community.  

16th October - SIA hold their 40th AGM at the F1 Williams Conference Centre, Oxfordshire. HRH Princess Anne attends. Following their is a conference on new SCI technologies; eye gaze, exoskeletons, FES to name a  few. After their is a chance to see 'Frank's private car collection.  A great day. Congratulations SIA on 40 years of services to the spinal cord injured community.  

7th October - I can't believe it but the first SIA Oil and Gas Gala Quiz committee meeting is held in preparation for the 2015 event. It has come around again quickly me thinks! 

4th October - There is a workshop for Trustees and Senior Management staff at SIA House, Milton Keynes to give everyone plenty to think about.

In the evening my husband and I are invited to join others from the SCI-PSP and make a table at a Gala evening in aid of the Rooprai Spinal Trust (RST) at Sopwell House in St. Albans. It is a wonderful evening full of humour and fun with a serious fundraising side to it. Thank you for the generous invite RST!   

2nd October - I have to visit my car adaptions agent today for some service work on modified car. I'm reminder how lucky I am to have such a professional car adaptions agent supporting me. Peter Short at DS and P Electronics can be found between Bicester and Aylesbury. Very happy to give him a plug!  

1st October - The Top 10 research priorities for spinal cord injury are launched. it is the first known national agenda for research into this subject to be ever published. It has been a true team effort to get this far. Well done to all! Visit www.sci-psp.org.uk for the research Top 10 priorities.

25th September - The SCI -PSP have an opportunity to discuss with NETSCC how to take forward some of the TOP 10 research questions once published. Talking of publishing...not long to go now 'till the launch date.

16th September - Very excited to have a reason today to visit SIA and welcome Andy Uttridge from the Rooprai Spinal Trust to the building. He gets a tour of the building. SIA House is always a great charity HQ to visit for meetings. It demonstrates how accessible building design makes for an inclusive workplace for all levels of those with an SCI.  

22nd August  - A visit to the National Spinal Injuries Centre at Stoke Mandeville today to meet with an OT keen to research into women's health issues, something I wholeheartedly support.

18th August - It's a quick turn around and back to SIA House again today for meetings.

16th August - Marks another Trustee meeting at SIA House in Milton Keynes. All Trustees and Senior Management meet to discuss issues around governance of SIA. There is always lots to discuss. 

5th August - Meet with our communications officer and care representative from the SCI-PSP to discuss how to take forward the Non-Researchable questions generated from our first stage questionnaire. Plenty of ideas are generated.

29th July - Visit the Stoke Mandeville Spinal Foundation to meet with their Research Director, Dr Joost van Middendorp, to learn how SIA can offer Patient and Public Involvement (PPI) to select future research projects.  

24th July  - Tele-meeting with the SCI-PSP. Thoughts turn to the launch of the Top 10 research priorities and what that will involve.

22nd July - Visit SIA House, Milton Keynes for a meeting with the Business Development team. Keeping the cash flow going to support SIA's services is so important.

5th July - THE SCI-PSP Workshop is held at Stoke Mandeville's Postgraduate Centre. The day has finally arrived when the battle for the Top 10 priorities for a British research agenda will be set for SCI.

20th June - A SCI Priority Setting Partnership tele-meeting. Plans are shaping for THE workshop when to Top 10 Research Priorities will be set. Not long to wait now!

5th June - Birmingham bound for the SIA Rebuilding Lives after SCI Awards evening. I am presenting the first award of the evening, the Torch Challenge. Stephan Mangan is our entertaining host. All the nominees are winners by my reckoning! 

4th June - Visit Withy King offices in Oxford who are hosting a wonderful art exhibition of work by the very talented tetraplegic mouth artist Keith Janz.

31st May - The SCI PSP interim prioritisation research survey closes and the task to process all then data begins.  

17th May - My goodness these SIA General Council meetings come around quickly!

16th May - Following my husband's progress as he pedals from London to Paris on behalf of SIA and over the next three days am posting lots up on Facebook!

12th May - A tele-meeting with the SCI-PSP and initial survey respsonses are very encouraging but we need more to participate.

28th April - It's back to SIA House in Milton Keynes to help plan for SIA's 40th AGM to be followed with an exciting conference...looking forward to sharing what it will be about all in good time!

24th April - Visit NISIC Stoke Mandeville and attend a great talk given by the family councillor, Sarah Standish, on 'Relationships after SCI'. 

22nd April - And the second James Lind Alliance SCI Priority Setting Partnership survey is launched. Help us start to prioritise what should be researched for those living with SCI.

17th April - Meeting at SIA House in Milton Keynes.

5th April - Meeting with Harmers Philatelist, Gio de Vico, to discuss a stamp auction in aid of SIA.

19th March - To Milton Keynes today for meetings at SIA House.

14th March - Back to the Stoke Mandeville Spinal Foundation for another SCI - Priority Setting Partnership meeting. Dates emerge for the interim prioritisation questionnaire. I'll be posting them on my Focus Forwards facebook page. Watch out!  

10th March - A SCI-Priority Setting Partnership meeting at the Stoke Mandeville Spinal Foundation, Bucks. It's time to challenge all the great questions the first survey raised as prioritisation process kicks off.   

6th March - Oil and Gas Gala Quiz held at the Grand Connaught Rooms, Covent Garden. A whopping £ 45,500 is raised in aid of SIA!   

26th February - A busy week putting things together for the Oil and gas Gala Quiz in aid of SIA; event next week. Yikes!

20th February - Another visit to Dogs for the Disabled in Banbury. It proves to be so important to understand ones limitations when working on a new venture, in my case finding a canine working partner.

15th February - A trustee meeting at SIA House in Milton Keynes is always a full day.

4th February - Final SIA Oil and Gas Quiz tele- meeting before the event next month. Hoping we have all our bases covered!

20th January - Visit Dogs for the Disabled at the Francis Hay Centre in Banbury.

9th January - SIA Oil and Gas Quiz tele-meeting .... the event is shaping nicely.

1st January 2014 - Happy New Year to all Focus Forwards followers!

 

2013

19th December - An evening spent at our local GP Surgery acting as a 'neuro - specimen' for trainee Oxford medics to 'diagnose' gives an opportunity to explain some of the challenges of living with an SCI to those starting out in the medical profession.

9th December - The SCI - Priority Setting Partnership meet at Manchester Harris College, Oxford to review the close of the first questionnaire. There has been a great response.

3rd December - SIA Oil and Gas Quiz tele-meeting .... have come so far with our planning but still more to do!

21st November - Attend public lecture given by Dr Sophie Petit Zeman at the Nuffield Orthopaedic Centre, Oxford on Patient Involvement in Research.

15th and 16th November - Visiting SIA House for meetings. 

5th November - SIA Oil and Gas Quiz tele-meeting...how quickly these meetings come around!  

31st October - Visit Stoke Mandeville and attend SPIN with focus on the SCI-PSP.

17th October - The SCI-PSP hold an interim tele-meeting for an update on the on-going survey. So far so good!

1st October - SIA Oil and Gas Quiz tele-meeting with organising committee.

9th September - The Spinal Cord Injury Priority Setting Partnership questionnaire is launched. www.sci-psp.org.uk

3rd September - A visit to SIA House includes a chance to discuss plans for the 2014 Oil and Gas Gala Quiz evening; to be held in Covent Garden, London. Charity fundraising is always an on-going affair.

28th August - The Spinal Cord Injury Priority Setting Partnership holds a tele-meeting; not long 'till the launch of the first questionnaire now. 

17th August - SIA Away Day meeting for senior staff and trustees; always an interesting day. 

16th August - SIA Trustee meeting in Milton Keynes.

6th August - Visit the Sequela Foundation premises in White Waltham, East Berkshire. Their vision to campaign and enthusiasm to offer improved care and support for the neurologically impaired in East Berkshire is impressive.

3rd August - Meet with Managing Director of Harmers, the Philatelic Auctioneers, Experts and Valuers to discuss a fundraising opportunity for the Spinal Injuries Association.

30th July - Tele-meeting with the James Lind Alliance Spinal Cord Injury Priority Setting Partnership.

26th July - Visited the impressive new exercise facilities of 'Neuro kinex' in Watford. They offer a whole new approach to exercise for the neurologically impaired. An inspiring visit.

15th July 2013 - Piloting the Spinal Cord Injury Priority Setting Partnership questionnaire amongst patients, staff and interested parties. How revealing! There's more work to be done.

5th July 2013 - Voted 'Volunteer of the Month' for support to mentoring services to The Back Up Trust. Thank you Back Up!

25th June 2013 - Visit Stoke Mandeville Spinal Unit and help patients prepare a personal care plan. There is so much to think about.

24th June 2013 - A tele-meeting with the James Lind Alliance Priority Setting Partnership for spinal cord injury.  

20th  June 2013 - Visit Oaskey House, the rehabilitiaiton centre for the Injured Jockey Fund, in Lambourn Berks. Hobbs rehabilitation have organised a seminar 'Where does rehabilitation start and stop?' with emphasis on the value of sport and leisure in the proicess. It's an enlightening day.

18th June 2013 - Graciously accept an invitation to attend a formal dinner as a guest at the historic location of the Apothecaries Hall. A unique chance to network within the medical world of neurosurgery emerges.

17th June 2013 - Particpiate in delivering the Independent Living Programme for patients at Stoke Mandeville Spinal Unit. It is so important people prepare for living with care assistance and all it embraces.

15th June 2013 - My husband and I host a RNLI summer fundraiser. The Rt Hon. Teresa May - Home Secretary attended. The RNLI does stirling work to promote the hazards of Tombstoning and educate how to better seeks thrills and not the spills which can result in spinal cord injury!

6th June 2013 - WISCI (Women In Spinal Cord Injury) Award evening at the Botanic Gardens, Birmingham organised by SIA. Gary Lineker hosts the evening. Every nominee is a winner as far as Focus Forwards is concerned! I nominated three wonderful ladies for the Outstanding Woman; Non-specialist centre Award.

4th June 2013 - Interviewing Madam Becky Adam of Para-doxies, an on-line site for sexual services for the disabled community. Never a dull day!

1st June 2013 - forward (SIA members magazine) publish 'Back on Track' an article written about my experience of a driving assessment for an adapted car after 17 years of not being on the roads! 

30th May 2013 - It's a tele-meeting with the James Lind Alliance Prioirty Setting Paternership for Spinal Cord Injury.

18th May 2013 - At SIA for a Trustee meeting; always a full day!

12th May 2013 - At the ACE cafe, North Circular London, in support of the SIA bikers ride out from Milton Keynes. Some fab hardwear on display!