Minutes – 22 August 2017 Field Place, Goring-by-Sea, Worthing Chair Tom Wye welcomed everyone to the meeting including speakers Lynda Nurse and Mark Brierley of South Downs Leisure and thanked them for the use of the venue, Field Place Manor House. Apologies were received from Chris Moon Willems, Maureen Bacon, Lynda Bashford, Dawn Fairbrother, Kimberly Roper, Jill Lyons, Sally Honey, Ian Blackwood and Amanda Jupp. Matters arising from minutes of 21 June 2017 A letter had been sent to the Alzheimers Society following carers’ concerns that they are not welcome at the service once their partners have transferred into residential care. A time when they felt their previous experience was valuable to existing members. Copy of letter: Dear Ms Rennie It has been brought to our attention that the Carers Group that meets at your branch in Stone Lane Worthing has informed its carers that when their cared for person has either passed away or gone into full time residential care, they are being asked to leave the group. This decision, it would seem, is causing much distress and anxiety with your carers, who may have attended the meetings for many years and have indeed made friendships and support connections, in some cases they are in place of other friendships which as I am sure you will recognise, fall by the wayside when a diagnosis of dementia has been made. They are now being asked to leave the group therefore breaking their peer support network which you have encouraged these carers to form in the first instance. As chairperson of the local Worthing Dementia Action Alliance group, I have been asked to raise this issue with you as a matter of urgency for your reconsideration. We have carers who attend our Alliance meeting on a regular basis and it is clear that your decision is causing a high level of emotional stress. I appreciate that this is probably some sort of national head office decision, but if our carers are telling you they don’t want to stop attending and fear losing their support network, then surely you are listening to them? If you are not the person with the authority to make a change regarding this situation, can you please indicate who I need to speak with? My direct email address is: [email protected] I would appreciate a prompt reply as I have assured your carers of a swift response to this issue. A reply had been received and was read out to the room Thank you again for your letter of 22nd June detailing concerns regarding the way in which Alzheimer's Society runs Carer Support Groups and the impact this has had for carers in Worthing. We fully recognised the value that carers derive from attending carers support groups and the support they receive from others attending the groups. However, in order to ensure that new carers are able to access the same benefits, we do try to move carers on to develop their own networks of support outside the group once their caring responsibilities have ended. We do not do this without a phased end to their attendance whilst also giving carers confidence to continue to meet those they have built up relationships with outside of the formal carers support group. It is a major benefit of our support groups that people have the chance to build up new networks and friendships that they are able to continue long after their caring responsibilities have ended. I hope that helps to explain why it is important that the carers support groups continue to support those with current caring responsibilities whilst supporting those no longer caring to move on. Yours sincerely Sue Sue Rennie Services Manager – West Sussex North Alzheimers Society Carers present disagreed that it was a phased cut-off, but the Chair did explain that he felt that as spaces were limited that sometimes difficult decisions have to be made and that priorities had to be given to those that needed the service. It was understood that past carers had much to offer and it was suggested the letter be shared with Tim Wilkins and asked to discuss this with the Town Cryers and report back. It was a national policy and not a local directive. Funding update Jacqui Swindells explained that she had been working with Julia on a funding application to the Henry Smith Foundation. An application had been submitted for a 21 hour, 3 year post for a co-ordinator for the WDAA. It was thought we would also re-submit the application to the Members Big Society Fund for the post for one year. It was expected to be over-subscribed again. A suggestion was made to look at Reaching Communities fund. Matters arising from the Steering Group minutes Bus routes with audible announcements. Suggested we send a letter to WSCC to fund this perhaps. Kelly Compton had spoken to Pauline Cox at Worthing Town Football Club, and they had expressed an interest in joining the Alliance. Julius Newman was going to speak to Worthing Medical Group regarding membership. Julia’s work was still ongoing with CEO of West Sussex Carers Support, and she had hoped to attend this meeting. Proposed Constitution of Worthing Dementia Action Alliance A proposal had been discussed at the last Steering Group meeting, and this had been completed, and copies had been made available to attendees of the meeting. The content was discussed, and there were two amendments which were suggested. It was suggested that Ian Macara, Bennett Griffin, would ask a colleague to look over the constitution and amendments. The attendees were asked to vote on the constitution, and it was carried unanimously. There were approximately 36-40 people present. Speakers from South Downs Leisure and vision for a Wellbeing Garden at Field Place The Chair introduced Mark Byerley, Facility Manager and Lynda Nurse, Development Director from South Down Leisure. South Downs Leisure was introduced as a charitable trust with 450 staff which is run independently of the council and profits are invested back into their facilities for the community. Field Place is used for weddings, conferences and is a health and wellbeing hub. They also have Worthing College and Davisons Leisure Centre as well as Worthing Leisure and Splash Point. The trust is involved in many community projects, an over 50s club, dance theatre arts, crafts and a full range of sports. The work with Mind and offer bespoke classes for people with mental health. They are also an environmental trust, work with Last Fisherman Standing, have woodwork and garden projects, a gym that tackles social isolation, work with kids with autism and have a disability open day. They organised a Live Well Day Worthing with Alzheimers, WDAA and other health and care organisations which was very successful and want to make that an annual event. The organisation is a member of the alliance, have Dementia Friends Champions within their staff and their plans are well underway to roll out Dementia Friends across the organisation. They explained they were just starting their journey and wanted help along the way from the alliance. Their reason for the presentation was to encourage feedback on a new project which was a Wellbeing Garden. One of their greens which is no longer in use would be the preferred site which is located towards the back of the site adjacent to the large barn. They had previously discussed different ideas, and one was to make the space dementia friendly. They had discussed plans with Juliet Sargeant, an award winning garden designer who had exhibited at Chelsea Flower Show in 2016 and was awarded a Gold for her garden entitled The Modern Slavery Garden. They explained that Field Place was a safe space. Mark Byerley lived on site and had never had problems with trespassers. Transport was good, there was adequate parking, and it was also on a bus route. People felt comfortable and enjoy the space therefore it was felt that a community garden would be beneficial to the community particularly those who wanted to walk around a quiet space with a carer or, just to experience peace and quiet. All year round colour and sensory planting would make this a space that could be used regularly and support wellbeing of the mind, body and soul. Only a rough design at the moment. The WDAA said they would circulate information to the group including a short survey and future ideas. The chair agreed the concept was brilliant. Lisa, of Breathing Spaces, was asked her opinion as they had worked with people with dementia on projects at the Sydney Walter Centre. Lisa asked if plans included a vegetable garden and if it would be community run? Worthing Leisure Centre has a community gardening group currently who grow and sell chilli jam together with other things. South Downs Leisure put on the Green Dreams Festival, an annual event, to encourage families to be environmentally friendly and use green spaces. WDAA agreed to supply stats for people with dementia locally and other information which could assist with the funding application. Suggestion to work with another charity on the funding application. Suggestions included Alzheimers, Guild Care, Worthing Society for the Blind, Mind. Consideration also for isolated and lonely people and other groups who could benefit. Lynda and Mark were thanked and the Chair agreed this would be a great benefit to the community and that the alliance would be very pleased to support. AOB Stagecoach buses Tim Wilkins gave an update on the Stagecoach Bus Company and their action plans for membership of the WDAA.