Worthing Area Minutes – 11 August 2015

Venue: Alzheimer’s Society, Stone Lane, Worthing

Chairman: Tom Wye

Minutes were agreed from 2 June meeting.

  • Steering group arranged to meet on 30 September at 3.30pm at Methold House.
  • Details of Dementia Alliance meetings to be forwarded to Deputy CEO at Mind.
  • Tom Scott had agreed to give a talk on Funding Care. No date as yet arranged.

A presentation by St Barnabas Hospice by Jack Larkham

Important that people are given a choice of where they should be looked after – at home (or a care home) or in a hospital.

Jack explained about the palliative care that was available: the day hospice, support for families, family services, social care, bereavement care, physiotherapy and the holistic side of the care.

Visits are a large part of the hospice’s development, as are Community Companions, the Education Centre and supporting people with dementia. He explained that services were changing to fit the future delivery of End of Life Care. There were still many issues that they needed to address particularly around the huge population growth in older people and the numbers of over 90 year olds that would double in the next 15 years.

St Barnabas will be changing to meet these needs and their future strategic goals would reflect this. Previously the hospice focusedmainly on cancer. As treatments have improved, and deaths from cancer have reduced to 28%, there is a recognised need to improve the reach, referrals and services that the hospice provides and offer quality care based on need.

The main needs are now:

  • Liver failure
  • Renal failure
  • Heart failure
  • Dementia

St Barnabas are recruiting for an Admiral Nurse to be based at the hospice which will be funded. Currently, they are aware they do not have the skills, knowledge or expertise that they need in the field of dementia. Their resources are not enough for stand alone services and they are still working on their strategy. They would like to find out what people need and,being part of this network, will help them establish the local requirements.

Should they focus on:

  • Advance care planning
  • Bereavement support
  • Clinical education
  • Carers support

There is a necessity to provide services to augment the existing services. The addition of an Admiral Nurse will provide the means to upskill staff, volunteers and the environment at St Barnabas in the first year and then build a strategy to link in with existing community services.

St Barnabas would appreciate as much information and support as possible to fill the gaps. (Jack’s email is at the end of these minutes and he would be pleased for organisations to contact him).

Tim Wilkins, Alzheimer’s Society, thanked Jack for coming along.

Comments and questions from the floor included:

  • Developments along similar lines at St Wilfred’s Hospice, Chichester and St Catherine’s Hospice in Crawley. St B said they have connections with St Wilfred’s.
  • Perceptions of total end-of-life care at hospices being broken down.
  • 600-700 people a year going to the CCG for dementia diagnosis.
  • Be creative with services as it is impossible to deal with that kind of numbers.
  • Nurse (Admiral?) to support the carers group.
  • Six-week course on advanced communication skills, advice on what kind of changes will occur over time or augment existing health care professionals and advance care planning.
  • Good for professionals to have that resource and disseminate information
  • Each carers group would have different needs.
  • Tom Wye mentioned the training of Community Champions and set out to make all of Worthing Dementia Friendly.
  • There would be more help out there for carers.
  • Need to share the skills as there is not enough money in the system to help everyone.
  • St B had been overwhelmed for the demand for the Hospice at Home service, particularly the need to embrace the family and look after everyone. This service has been operating for 2 years.

Presentation by Jayne, West Sussex Coastal Alzheimer’s Society

Carers support groups – Alzheimer’s Society

Operating in Worthing, Rustington and Shoreham – these are monthly groups for carers with activities for the cared-for. Include open discussions which are guided by carers needs and are unique in their own way.

Centre Club– managed by Tina. The club is for people who have received a diagnosis of dementia before the age of 65. They take up to 12 people and run 2 clubs each week on a Tuesday and Thursday between 9.30am and 4pm. Includes client led activities, home cooked lunch, afternoon outing (minibus) and tea, plus access to the garden.

Waiting list on a Tuesday (subsidised by CCG, costs £17 per session). Thursdays – full cost £50 per person, per session.

Alz Café is a bi-monthly social event held in the evenings (6.30pm-8.30pm) with a speaker/entertainment and refreshments.

Cllr Bob Smytherman asked if a case for support could be made to the CCG for under 65s in West Sussex as a joint package. Bikram (CCCG lead for Dementia) felt he would be looking at West Sussex County Council to fund this as West Sussex, as a whole, was outside of the Coastal CCG area - but that he would be in support. Bikram felt the support should come through the council in the first place.

Tim said: ‘along with the Centre Club in Worthing, there was Neil’s Club at Haywards Heath for younger people with dementia and Can Do at K2 in Crawley.’

Bikram said that one of the problems the CCG has, about setting up in a rural geographical area, is that there are not the number of patients and it has to be balanced out on a county basis.

Home Support Service

  • 7 days a week. 8am – 11pm with highly trained staff
  • Engaging with the person with dementia/continuing a hobby/reminiscence
  • Transport is provided by Home Support Workers - accompanied trips out and activities outside the home.
  • Personal care
  • Medication

Dementia Support Workers and Dementia Advisors

Popular service supporting people with dementia and their carers with info and advice/signposting/referrals – many based across the county.

Worthing Town Cryers

A group for people living well with dementia meeting monthly.

  • Organising another Carol Concert in 2015 as the first was ‘brilliant’ with traditional tunes and carols.
  • Review a County Council project and look at alternative ideas for younger people with dementia.
  • Members planning another Dementia Awareness talk in Worthing High School

Miscellaneous

  • National Alzheimer’s Society is working with utility companies on a document about how to help people
  • Gatwick wants to become more dementia friendly
  • Chichester Dementia Support group – hub at Tangmere
  • Guild Care is shortly setting up hairdressers/barbers that are dementia friendly. All of their centres and homes will be open to people with dementia and staff will be Dementia Friendly and aware
  • Dementia Friends sessions have recently been given to Worthing Hospital staff and OTs by Jacqui Swindells

Advocacy and CRISP courses

Alan has been the Advocacy Manager at the Alzheimer’s Society, Worthing, for over 11 years. The service is not as widely used as it could be and it is not a service for the carer. It outlines the things ‘I can do’ and ‘what I can’t do’ for the person with dementia. Alan works with people, listens to them in order to record and document their concerns and, in doing so, becomes the voice of a person living with dementia. Finding out how people feel is very important and ensures they have access to choice which is veryrelevant to their mental capacity and the Mental Health Act.

CRISP training is about people being able to care for the person with dementia and come out the other side relatively unscathed. The courses support the carer in many ways and are very valuable. They are also for neighbours and relatives. Courses are 2 hours a week for 6 weeks. Allie Beddard said ‘CRISP 2 was amazing and just at the right time for me. Brilliant.’

Workshops are 20 hours. There is a CRISP 1 (for early diagnosis) and CRISP 2 (for further on in the journey when needs are greater). Carers who have made promises to their loved ones are prepared to stick to these promises to the very end. However, they have to look after themselves and it is a very difficult job 24/7. Courses help minimise conflict and are about survival.

Over 300 carers have completed the courses in the past 3 years including Crawley, Horsham, Haywards Heath, Worthing, Selsey, Chichester, Southwick.

Time for Dementia Study

Sophie, Network Manager for Alzheimer’s Society, from the University of Surrey & Brighton Medical School, spoke about a programme involving pairs of students 4 times a year who are developing an understanding of people with dementia by spending time with them in their own homes. This includes Junior Doctors, Medical students and paramedics. They are working with 70 families and their primary carers in West Sussex and Surrey. Feedback from students has been phenomenal as they are learning directly about the disease and also how people with dementia and their carers want to be treated and listened to.

Very positive outcomes as students have grown in confidence around people with dementia. Everyone involved has been evaluated and, following this pilot scheme, it is expected to be rolled out to other med schools.

Any other business

Details about Mental Health Week were announced – October 5-10. This included the Library Service, a Dementia Day, Sussex Partnership Trust, Dementia Friends, Spiritual Support plus information and advice on local services.

New service to launch in September Driving Miss Daisy – for people with special needs. Staff will be Dementia Friends. Leaflets on the table.

Dementia Friends sessions are progressing across Worthing Churches and they are happy to promote the Carol Service.

Guild Care has expanded their Time Out for Carers Sessions at the Bradbury Wellbeing Centre, Haviland House. The Butterfly Club for people with dementia with special needs is going well (Tuesdays) and another day at Adur has been launched. Anyone who would like details of these services can phone Jacqui Swindells on 01903 528610. People using the service are trialling a new App around reminiscences with pictures and music.

In Rustington, the Forget-me-Knot Centre offers an out-of-hours service on a Sunday and Age UK provides an alternate Saturday Service called the Elderberry Club.

James, from Adur and Worthing Wellbeing, spoke about the walking football exercise sessions which are now including people with dementia.

It was felt that Worthing Dementia Alliance should be applying to the Big Society Fund. (Bob Smytherman to discuss dates with Lydia – support officer re closing dates)

Next meeting:

28 October 2015 at 4pm Guild Care Centre, Methold House, North Street, Worthing BN11 1DU. Everyone welcome.

  • There will be a short presentation by Tom Scott, Director of Foresight Care Advice Ltd of Worthing on financing care for people living with a partner.
  • A presentation by Tim Wilkins on how to join the Alliance online.
  • An update on Nat West Bank and others joining the forum
  • A discussion on what people would find useful as we put together our own website
  • A discussion on Worthing and Adur – joint or separate forums/joint or separate alliance?
  • Updates on Breathing Spaces gardening clubs and AOB

If you would like to feedback to St Barnabas please contactJack Larkham,

Other useful contacts:

Jacqui Swindells:

Tim Wilkins:

Julia Johnson:

Tom Wye: