31st January 2011 NHS SCR explained & Mark Smith of NNAB Leisure Talk

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Minutes of General Meeting

Held on 31st January 2011 at 2:30pm

At Wherry Way Communal Room, Caister Road, Great Yarmouth

David Wilkinson, chairman, welcomed everyone to the meeting and presented apologies from Liz Kitchener, Tim Poole and Linda Cooper. Those present introduced themselves and there were 29 in all. The minutes of the September meeting were agreed as a true record. The November meeting had been cancelled due to bad weather. David said that because there were several guest speakers present, other business would be dealt with at the end of the meeting.

Lewis Roberts, Researcher working for Brandon Lewis MP, said that they had reviewed the minutes of the September meeting. Lewis reported that as a result of the Group?s and in particular Penny?s persistence, Brandon Lewis had met representatives of the Borough Council and it had been agreed that although it was not yet a legal requirement, the Council would phase out red and white scaffolding tape and in future use only yellow and black. Also Mr Lewis had met with Baroness Eaton, the Local Government authority chairman, who would flag up the issue of yellow and black scaffolding tape as a National Campaign. Lewis was thanked for attending the meeting.

Jason Randalls, from Great Yarmouth & Waveney Primary Care Trust had been invited to the meeting to pass on information about the new Summary Care Records. By now everyone should have had information in the post about these Records, but Visually Impaired members may not have been aware of them. The Summary Care Records are an electronic record of basic clinical information about individual patients. The records of basic information, including details about medications prescribed in the last 6 months and any allergies recorded by GPs, should be completed by September this year. The records will be fully secure and confidential, and only accessible through the NHS private computer network, only on NHS premises, and by holders with a smartcard and a password programmed to authorize access to the records. In reply to a question from Alan Ellson, Jason confirmed that records would only be available to clinical healthcare staff, not secretarial staff or insurance companies. A lost or stolen smartcard could not lead to abuse of information, as it would be of no use without the password or outside of NHS premises. Jason emphasised that at this stage the information held would only be a summary, not full medical history, and that in normal circumstances (unless a patient was unconscious) the patient?s permission to access the information would be sought, and each time a patient?s Summary Care Record was used, details of when, where and by whom, would be recorded. If anyone chooses not to have a Summary Care Record, he or she should tell their GP practice, otherwise a Record will be produced. Individuals may alter their decision at any time. Jason pointed out that the Records could be of use if a person is taken ill away from home, or taken to hospital at weekends or at other times when GP surgeries are closed. In reply to a query from Terry Driver, Jason said that paramedics and ambulance crews would not have access to the system, and Wendy George reminded Members of the ?Message in a Bottle? scheme run by the Lions, where patients could have a sticker on their door to inform ambulance crews that they had a record of medication in a clearly labelled container in the fridge. Other methods used by High Risk patients were bracelets which give details of medical conditions, using an ICE (In Case of Emergency) details stored as an address book entry on your mobile phone, and cards, similar to a credit card, issued to people, for example, with a heart pacemaker. Penny suggested that the broken eye symbol could be used on records of those with visual impairment. Judy Morrow was concerned that this Record was a waste of funding which could be better spent on patient care. Jason said it was a national, not local programme, and was centrally funded. In response to a question from Mark Smith, Jason said that there were no plans yet to include details of next of kin, or whether a patient was willing to donate organs. Jason would report back when he had made enquiries about whether the Summary Care Records were available in an alternative format for blind and deaf people. Patients are entitled to see their medical records, though some GPs make a charge for this service.

Ian Hardy enquired whether this was a first step towards replacing hand-written patient notes with electronic records, and was assured that hard copy would be retained, and that there were efficient daily back-up systems for the electronic records held at GP surgeries.

Penny suggested that the Group should revisit this topic when more information became available, and Jason confirmed that there will be public participation events in the future. He was thanked for his interesting and informative talk.

Mark Smith from NNAB, attending with his support worker Simon, talked to the Group about NNAB Heritage and Leisure activities, news of which was disseminated via leaflets and Magpie News, which were available for people to take away. The NNAB promotes a total of 18 leisure groups, including 7 audio book clubs which meet at libraries. Books are available in MP3 format, and most groups, including the one in Yarmouth Library, attract about 10-15 members. NNAB also arranges sessions with local authors, which have been funded by County Arts.

The Heritage group visits places of historic and architectural interest; curators of collections arrange to give talks, and there is hands-on experience of some collections. There was interest in having this kind of activity in the Yarmouth area. Many people felt that transport was a drawback for Norwich-based events.

The Theatre Group organises trips to performances with audio-description, with discounted tickets and the help of guides. The next visit is to ?Guys and Dolls? at the New Wolsey Theatre in Ipswich. Cost is £25 and there will be 2 minibuses going from Norwich. If any Great Yarmouth VIP Group Members would like to join this trip, they should book before the end of February. There are also opportunities to go behind the scenes and handle props, scenery and costumes.

Some members are already part of the GardenEyes gardening club, which has guest speakers once a month, practical workshops and its own horticultural show. There is also a Thrive gardening group for people with disabilities, and the two groups co-operate for visits and meetings. Tim Gee from Mousehold Garden Centre recently gave a talk about tools and plants.

Some groups meet regularly at the Bradbury Centre

? Arts, every Friday 10-3, currently preparing for a Dragon Festival procession on 19th February; working in collaboration with the Sainsbury Centre for Visual Arts craft and basket making , exploring Tactile Art; study of art through touch and sound with the ?Living Paintings Trust?;

? The NNAB Writing circle meets on the 3rd Thursday of each month, for sharing poetry & prose;

? Discussion Group meets in the afternoon of the 1st Tuesday of each month

? Music Group meets in the afternoon of the 4th Friday of each month, for singing, playing instruments and informal get-together in the coffee shop

? The Technology Group meets on the 1st Friday of each month, to help with questions, problems and information about gadgets, and arranged visits.

David asked whether there would be interest in arranging a visit behind the scenes at the Pavilion Theatre in Gorleston. Ian Brady said that he felt sure the owners or Conservation Officers would give talks and a tour, but it was not a suitable venue for audio description of performances.

The Odeon cinema at Riverside in Norwich has audio description headsets. Penny queried whether the Hollywood Cinema in Yarmouth provided audio description.

To the question of other activities that the NNAB provides like walks, these are physical sporty kind of leisure and anyone interested should contact Rebecca, who organises a series of walks, ten pin bowling, sailing trips and other outdoor activities, details of these can be found in Magpie News.

Ian suggested that that a Group visit to Great Yarmouth Pottery would be an interesting experience, with the opportunity to work with clay as well as learn about the Pottery, and that Karen and Ernie Childs continued to arrange heritage walks around the town. Shaun to supply contact details to Mark.

Wendy encouraged members to get in touch with her, Liz or Janet if they felt they would like any particular activities to take place at the Hall Quay premises, because many people had voiced concerns about travelling to Norwich for activities.

Mark was thanked for his interesting and informative talk.

Penny Leggett from Yare Care had been expected to give a talk but was unavailable. She would be invited to the next meeting if possible.

Other Business

Following on from Mark?s talk, there was discussion about transport to enable blind and visually impaired people from Yarmouth to engage in activities elsewhere.

Centre 81 runs a community door-to-door bus service within the Borough, Monday to Friday. Those eligible have to be over 18 and have a permanent disability, be entitled to a concessionary bus pass or over 60 and cannot access public transport. At present membership of the scheme is £5 for the first year, then £3 per annum, plus the cost of individual journeys, which is more than public transport but much better, as it provides assistance with taking shopping home. For more details contact Centre 81 (01493 332253), (www.centre81.com).

DIAL continues to be very busy with benefit-related enquiries, especially Disability Living Allowance applications and renewals. Weekly outreach services continue to take place at the Red Cross Coastal Centre on Fridays, appointments and drop-ins at Great Yarmouth Library on Tuesdays and Herbies on Thursdays when no appointment is necessary.

DIAL also offers a Money and Debt service. Anyone experiencing financial difficulties can contact Stephen or Diana at the DIAL office to arrange an appointment. DIAL has recently introduced Disability Awareness workshops, with a few places still available. For more information contact Jo Hawes (01493 856900). David Mercer cited his experience of trying to obtain a large print Tax Return form. After 12 phone calls and receiving letters threatening a penalty if he missed the deadline for completing the Return, he sought help from DIAL, and after 1 phone call and within one week he received the form he wanted and a 3 month extension to complete his Return. Jo from DIAL thanked VIP Members who had expressed their appreciation of the service provided by DIAL.

Members were encouraged to attend the DLA Reform Meeting to be held at Christchurch on Tuesday 8th February 2011, where important issues relating to changes in DLA in two years? time were to be discussed. Apart from London, this was the only open meeting arranged to date. Town & Country Travel would provide transport. Members should aim to arrive between 1.30-1.45. If people with disabilities did not make their requirements known, they would be overlooked. Town Country Telephone Number 01493 301759.

It was important to keep up pressure for retaining essential services provided by the Sensory Support Unit, with funding now being cut by 40% rather than the wholesale closure originally planned. It was essential for blind people to be pro-active in joining in consultations and setting out what they expect the Sensory Support to provide. Shaun was thanked for his efforts to raise awareness of how dependent blind, visually-impaired and deaf people were on the services provided by the Unit.

Penny told members of a very negative experience of completing a form for DWP and being told that her eyesight did not meet the criteria for the Higher Rate Mobility Allowance, that if she appealed she would lose the allowance entirely and that she would have to go to an Industrial Tribunal to try to have it re-instated. She contacted Clare at RNIB who took immediate action which resulted in Penny being awarded the appropriate allowance. Penny?s advice was not to be intimidated by forms and threatening letters, and to get a supporting letter with clinical details from the GP or consultant to confirm the level of sight loss in order to retain this hard-fought for allowance for people with severe sensory loss.

Terry Driver sought advice about the apparent stalemate over the campaign for safer crossing at the junction of King Street and Yarmouth Way. Penny said that Norfolk County Council were resolutely opposed to placing any further railings on the dangerous corner because of interference with underground cables. It was suggested that the only remaining course of action would be to ask for a raised hump on the road surface between St George?s Theatre and Christchurch, as a last-ditch attempt to slow down traffic and avert a serious accident on the corner. Meetings, consultations and negotiations had come to nothing. It was suggested that perhaps a technical adviser from the RNIB might be able put pressure on the Council to take action. Penny agreed to contact Clare at RNIB on behalf of the Group.

The NHS Small Grants cheque for £1207 paid been received, and funding would be reviewed again in August.

David reported that he had attended the celebratory lunch for Grapevine?s 30th birthday.

The NNAB was the Newsagents? Federation chosen charity, and one Yarmouth newsagent had collected £1,000 in 3 years, which it was hoped would be spent in Great Yarmouth.

Jeremy Goss, former Norwich City FC player, would be cycling to Cologne to raise funds for the NNAB. He plans to cycle 60 to 100 miles per day.

The Library Gardens had been officially opened in September.

At the October User Group meeting at JPH it was agreed to place information cards at bedsides. The police had attended a meeting of the Disability Forum before Christmas, and asked for members? feedback of their experience of dealing with the police.

Next Meeting Monday, 28th March 2011 at 2pm at Wherry Way Communal Room.

Guest speakers ? Sarah Morris, Matron Ophthalmic Ward, JPH; RNIB to talk about the changeover to digital TV; Penny Leggett, Yare Care.

Agenda for VIP User Group

Monday 28th March 2011

2:30pm to 4:30pm

Wherry Way Communal Room,

Caister Road,

Great Yarmouth

NR30 4DG

1 Introductions

2 Members Present

3 RNIB on Digital TV switch over.

4 Update from JPH ? Sarah Morris

5 DLA Campaign and Bus Concessions

6 AOB

7 Time and Date of next Meeting

Please ring 01493 301 759 to book your free taxi ride with Town & Country Travel.

Shaun McGarry, Vice Chairman

Great Yarmouth VIP User Group

01493 60 22 72 — 07 985 916 244

vicechair@gyvipusergroup.org.uk

http://www.gyvipusergroup.org.uk/ www.gyvipusergroup.org.uk

*** Achieving Respect and Understanding for Visually Impaired People ***

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