Bristol and South Glos Adults Network Meeting: Dementia Services

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1 Bristol and South Glos Adults Network Meeting: Dementia Services The meeting was attended by 34 people and 2 people sent their apologies. The full attendance list is in the appendix. Summary of Key Meeting Points Bids have been made for the Dementia Challenge Fund. Results of the fund will be available in November. It was agreed that a clear dementia pathway with mapped services would be helpful to circulate to providers and practitioners. Well Aware is a database and helpline that includes information about health, wellbeing and social care services across Bristol and South Glos. It can be used to identify support and to signpost and is designed for use by individuals and professionals. Visit To add details or to update information about your service E: info@wellaware.org.uk or phone Paula Shears, Support Services Manager, Bristol, South Gloucestershire, Bath and North East Somerset Alzheimer s Society update on services provided by Alzheimer s Society to carers and people with memory loss. Alzheimer s Society currently has five memory cafes in Bristol and South Glos. Three are in Bristol and two in South Glos. A third is planned for South Glos. The cafes cover a range of topics to empower people to live with dementia. The Alzheimer s Society has two dementia support workers covering Bristol and South Glos who offer one-to-one support for people living with dementia and their carers. People can self-refer or be referred by a professional in order for a support worker to visit. Support workers will signpost to help, often by phone. The dementia support workers will stay in touch with someone after they are first referred (often after recent diagnosis) and they will hold them as a case and will revisit the person after two to three months. Many people benefit from the services offered via groups. Singing for the Brain is very popular and there are waiting lists for Singing for the Brain groups e.g. in Staple Hill there are twenty couples on a waiting list. Other sorts of cafes are more of a social gathering. People establish a friendship group through the support groups and then form their own groups and no longer need the support of the Alzheimer s Society to coordinate their 1

2 activities, some walking groups have been established like this. The Alzheimer s Society is happy to circulate information/contacts for these groups. When people can no longer attend groups carers can attend for six months but after that the Alzheimer s Society can not offer support to carers so carers have begun to form graduate groups for support. Some groups are attached to leisure centres so people can enjoy the activities on offer as part of a sports and social club. E.g. at Bradley Stoke leisure centre people enjoy badminton, table-tennis, swimming (for carers) and dominoes. Due to the success of groups at Bradley Stoke another group has begun at Hengrove Leisure Centre. Thursdays 10am -2pm Hengrove Park Leisure Centre For further details please contact Alzheimer's Society, International House, Bank Road, Kingswood, Bristol, BS15 8LX Mobile: , E: Jonathan.Stockwell@alzheimers.org.uk the moment it is not well attended so please publicise to your contacts. Action: Paula to forward information about sports and social club for people with dementia at Hengrove Leisure Centre for people or attendees can find out more by telephoning (See details above). Also offer a tailored befriending service. At the moment have more people needing it than we have volunteers. The service matches volunteers with people who need befriending (carers or people with dementia). E.g. one person wanted to play snooker (without his wife, who would not normally go to the snooker club with him), so he was matched with a befriender who was happy to go with him to the snooker club and play. Have a day support service called The Limes which is geared to people with a younger diagnosis. It is a very active group for whom traditional activities are not suitable. In Bristol and South Glos have a carers support group specifically for carers of people who have recently gone into a residential/nursing home. Are able to offer small grant funding to support people with dementia who live at home. Have a phone line at the Kingswood office. It is staffed from 9am-2pm Monday to Friday. They would welcome your call. Action: Circulate the number of the local Alzheimer s helpline Helpline workers signpost so please send them details of your service to the Kingswood office. Alzheimer s Society International House Bank Road Kingswood 2

3 Bristol GS15 8LX Alzheimers Society locally are recruiting someone to start looking at identifying gaps in support for people when they get their initial diagnosis. Action: Contact Paula to find out more about the above post. E: tel, Ian Popperwell, Commissioning Manager, Bristol City Council Health & Social Care: Joint Dementia Strategy in Bristol & South Gloucestershire The current joint dementia strategy runs from A joint dementia board and joint dementia stakeholder group each meet quarterly. The direction of travel includes to: enable people with dementia to have support to live at home for longer avoid early/long-term residential care stays avoid people staying in hospital for too long improve hospital standards improve dementia services promote all services to become confident and competent to deal with people with dementia bring resources into GP practices enable people with dementia to be socially included find ways to normalise dementia and reduce stigma develop support networks ensure that more residential homes are able to provide a level of care for people with dementia improve learning and develop services so that people are dealt with more holistically. What we are doing: The dementia care pathway describes the notional journey that someone might pass through, from their first experience of memory loss, through to the end of their life. It is still undergoing development, but it will set out the range of services and support that people can expect at different stages of dementia. We are currently moving resources from secondary to primary care in order to support the care pathway. NHS Bristol has employed Dr Peter Brindle as a GP Lead for Dementia in order to promote a greater understanding of dementia and the care pathway amongst GPs. 3

4 Bristol City Council Health & Social Care is about to launch a new home support re-ablement service for people with dementia. The service, which connects with the Intermediate Care and existing re-ablement service, will provide short term interventions to assist people to stay at home for longer, support families/carers and improve existing domiciliary care packages. Bristol took part in the pilot of the south west regional Dementia Quality Mark (DQM). The pilot was successful and we have now adopted the promotion of the DQM. Two care homes in Bristol now have a Dementia Quality Mark. Bids have been made for funding through the Dementia Challenge Fund. The results of the bids will be announced in late October. Our bids represent developments in dementia services that follow our overall direction of travel and innovation in service provision. (Post meeting note: South Gloucestershire were successful in two of their bids, and Bristol in three of their bids. A full announcement about these is to follow). Dementia Strategy and commissioning in South Glos Paul Frisby: Joint Commissioning Manager, South Glos Health Commissioning and South Gloucestershire Council. Nationally the NHS has set up incentives for screening for dementia and referral to GPs. Locally the PCT are encouraging GPs to screen over 75s. Those who are positively screened will be put on a register to build up a picture which can be used as a tool for building up support services and identifying potential gaps. Parallel to Bristol we are looking at how we can support care homes. A major initiative in the NHS is partnership work between primary care and secondary care. In South Glos 20 out of 26 practices have signed up to some pilot work linking GP practices with specialist nurses and the memory clinic. GPs try to ensure there is not another explanation and refer to memory clinic or will diagnose at the GP surgery, this happens in particular with late onset dementia but they will still refer to the memory clinic if the case is more complex. The PCT will be reviewing how this has gone. The Dementia Challenge Fund The setting up of this fund is in recognition that following screening the services are not always meeting the needs of those diagnosed. The PCT is wanting to ensure that the range of information and ongoing support is out there. For example, need extra Singing for the Brain and education opportunities for carers. Would appreciate input to get some initiatives off the ground around Cribbs Causeway and their plans to develop it further and the large new estates planned. South Gloucestershire would like to set up a Dementia Action 4

5 Alliance for this geographical area - including Patchway - and very much would like to work with voluntary organisations working in this area and other partners too including police, town council, employers, retail centre and individual shops there and elsewhere in the area. Action: Contact Paul Frisby at e: paul.frisby@southglos.gov.uk for ideas around the Dementia Challenge Fund. Guy Stenson, Service Manager (Strategic Planning & Partnerships) Wanted to sum up. Paula, Paul and Ian have talked about what we provide. Are working across health and social care to ensure people are getting diagnosis as early as possible and are getting best possible information and support. Cameron Green and Maple Suite in Kingswood are supporting people in a very positive environment. It doesn t feel like traditional day services. Want to ensure that people are able to live good and positive lives to make sure we have good services and are commissioning services that are well equipped to deal with people with memory problems e g.all domiciliary care providers are equipped to handle people with dementia. Want to challenge stigma to make living well with dementia happen. Are taking an asset-based approach to focus on what people can do already and to build on that, share good practice. Want to ensure that people can live well in the community. It is important that initiatives can support people and are inclusive. Have a strong partnership across Bristol and South Glos but many more organisations that need to be linked in. Our delivery is dependent on all those organisations. Discussion, Questions and Answers Q: I am a GP and support people in their initial stages of diagnosis. We struggle at our surgery to support people around where to go next. We tell them about the Alzheimer s Society, but what actually happens, and how do we refer? A: People can refer direct to the Alzheimer s Society, or the GP can make contact. They would then have a conversation with a dementia support worker. Currently there are two workers who work 30 hours a week. There is a short waiting list, but they will see someone within around 14 days. The Alzheimer s Society will signpost to other organisations if appropriate. Comment: This is an example of where a clear dementia pathway is helpful so that anyone who has a role in relation to this knows whatother services are available and the routes in and out of them. 5

6 Q: Is there a central number for patients new to diagnosis? A: Not at present, although there has been a bid to the Dementia Challenge Fund for a handbook for people to take away or access online. Q: I have a 93 year old mother. She was diagnosed with dementia in She is now in the final stage of dementia. She lives in Kent and I worry about the structures of safeguarding for dementia patients. I am concerned about safeguarding and keeping her safe, as some of the other patients can be aggressive. What will Bristol City Council have in place for aggressive patients and other patients? A: BCC has a quality assurance team which is now under new management. It will visit every care home. It is promoting good safeguarding practices. The Dementia Quality Mark will also support this. Comment: Anyone in a care environment needs to discuss anything inappropriate. We can all take responsibility to report anything we see that does not look right. South Gloucestershire Council is just starting a new initiative to help providers raise care standards. Q: Is the onset of dementia more apparent for people of different backgrounds? A: No this is across the board. Q: What are the signs of dementia? A: For example, if an avid reader cannot understand a book, a TV watcher is losing sense of the narrative, or if someone is starting to muddle up people they know well. Q: Is dementia curable? A: No Comment: Managing the expectations of families and giving them a programme is more complicated than just talking about dementia. We do exclusion tests and advise them of these. When we have a specific diagnosis we need a timeline or pathway to give to patients. We are juggling with ten different organisations. It would be better if the pathway was easier to follow. It would be good if there was a chance of mapping services on a pathway. Comment: Memory Cafes are a good starting point for people who have recently been diagnosed with dementia. Comment: Most of us will develop memory problems. Most of us will remain in our own homes. Home environments are very important. WE Care & Repair can support people to make simple changes which can help when people have 6

7 memory loss. WE Care & Repair covers Bristol and South Gloucestershire and is open to referrals. Contact Q: South Gloucestershire Council Health Improvement Team provide Walking To Health. Social inclusion was mentioned in the talks earlier, which feels positive. How can we make sure our team and services are more dementia friendly? A: There is likely to be more and more training on this, possibly through Dementia Alliances. Comment: Awareness training is important but we also need to think about dignity and respect, what these mean for people with dementia, what they mean for those who live, work or come into contact with them.. It is more about building a relationship between our communities and dementia, than trying to learn a fixed set of responses to it. Comment: I work for a housing provider and find it hard to keep people with dementia there because of the disruption that can be experienced by other tenants. Once people become disruptive, other tenants reactions are hard to manage. Comment: Assistive technology, for example GPS can make a difference to people s independence. This gives security to people. Information Share Merlin Housing is the largest housing provider in South Gloucestershire. They link in with GPs quite a bit. There is as short-term response service for people with dementia and others. There is a long-term floating support team. They hope to expand Telecare. Age UK South Gloucestershire recently merged two day care centres. They are also carrying out a survey of the kinds of services people would want working on a needs base approach. Action: The Care Forum to circulate. Home and Instead Senior Care provide training services in Bristol and North Somerset, including handling training. Several organisation have taken this on. For more information, contact Care and Repair offer healthy home training to health professionals and volunteers. Contact for more information. Dance Voice provide dance therapy. Can anyone provide a placement for a dance therapy volunteer? E: pam@dancevoice.org.uk Homeshare has been running since 1999 Young adults support older people in return for free accommodation. There has been many success stories. Cambrian Green Day Services have around 20 people attending each day. They are open to families and carers. People are welcome to visit any time. A harvest festival was due to take place on 27 September. 7

8 Appendix List of Attendees Name Mark Baker Martin Green Derek Dominey Norman Douglas Ian Popperwell Lynn Mitchell Natalie Godfrey Eleanor Richards Heather Lowe Christopher Chikwanah Sylvia Pope Malcolm Kippax Beth Tovey Nick Ward Pam Fisher Damaris Howard Sergio Mesen Audrey Heard Verena Darling Mike Armstrong Sharron Clark Ruth Lane Kate Lockier Paul Frisby Saki Hartas Tina Scott Alex Francis Guy Stenson Michael Beck April Begley Wanda Owen James Picardo Nicola Bridger Judy Simmons Francesca Greaves Organisation Age UK Bristol Age UK South Glos Alzheimers Society Bradley Stoke Surgery Bristol City Council Bristol LINk Bristol Royal Infirmary Bristol Therapies British Red Cross Brunel Care Cambnan Green Day Care Quality Commission CCH CSV Environment Dance Voice Freeways Home Instead Homeshare Honest Homecare Horfield Health Centre Merlin Housing Association Merlin Housing Association Merlin Housing Association NHS Soth Gloucestershire Self Unlimited South Glos Council South Glos Council South Glos Council South Glos Councillor South Gloucestershire Over 50s Forum ST. George Health Centre Voscur West of Eng Care & Repair West of Eng Care & Repair Developing Health & Indep 8