1 The GOLD Group Growing Older 1998 - 2014. 2 Getting together Started in 1998 to help the GOLD programme. Originally 9 members over 50 & 3 supporters.

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The GOLD Group

Growing Older

1998 - 2014

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Getting together• Started in 1998 to help the GOLD

programme.• Originally 9 members over 50 & 3

supporters• Made a play: Too Old to Boogie! • Made the GOLD video• Funded ended in 2002 but people wanted

to stay in touch

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What happened next?• The group continued• Meet at least once a month• Respond lets us meet in their offices• At times money from Awards for All and paid

work. • New plays “Keep in Touch” and “Forget me not”• The Down’s Syndrome Association paid for a

new DVD on dementia

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We are the same people but…

• Tim and Corrine died. We went to their funerals

• Sarah, a supporter, moved to Yorkshire• John’s sister Sylvia joined the group after

her husband died• Edna doesn’t come as she had a stroke

and has dementia. She has lived in a nursing home for over seven years

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Today

• Say who we are• Talk about some of the things that

have happened as we have got older• Use the outcomes from the toolkit• Make you think about if we have had

the right support• Time for questions

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Michael and Sylvia Brookstein

• Married in 2002

• Share a flat together which has stairs

• Supported by HAIL since 2002

• Look after own money with help from staff

• They see Sylvia’s sister

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Betty Steingold• Has lived in her own flat for many years• Supported by HILT all that time ( now part

of Advance)• Staff come in twice a day• Goes to a Jewish day centre five days a

week• David helps Betty with her money

(appointee)• Betty sometimes sees her family

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Sylvia and John Phillips

• Live together in a council flat

• Moved there because John wanted a garden

• It has three steps to get into

• Have a cleaner once a week

• Sylvia looks after their money

• Sometimes she borrows money to pay for things

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Roger Brooksby• Shares a house with two other people• Moved there because it was getting

difficult to get up the stairs in the last house

• Has been supported by Choice Support for a long time

• Staff in the house most of the time• Roger doesn’t have any family. Has

good friends: Jane and June

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Pat Charlesworth

• Lives in her own flat

• Drives

• No help at home

• Looks after her own money

• Has some family and friends

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David Thompson

• Lives in a flat with his civil partner

• Has a cleaner

• Now works as a safeguarding adult nurse for Hounslow and Richmond Community Healthcare NHS Trust

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Noelle Blackman

• Lives in a house with her husband

• Would like a cleaner

• CEO of Respond

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I am supported by people who see the real me and know me well ?

• Betty has a key worker called Ilona• Before that it was Gabrielle• They have helped Betty to stay in her own

flat• They know who Betty’s friends are• They help her write cards and buy presents• They told David when they were worried

about things

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I am supported by people who see the real me and know me well ?

• Edna lives in a NHS nursing home• Staff care about her and she smiles when

one of them calls her• Some of her money is used for someone

to spend time with her twice a week. Nicola has done this for five years. They go out when the weather is good.

• The staff struggle to give her a bath every week. They also don’t think she should get up every day

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I am supported by people who see the real me and know me well ?

• Pat asked for help at home

• Had an assessment

• They decided she didn’t need any help

• Doesn’t have a social worker

• Gets help from friends

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I am involved in making the important decisions in my life?

• Michael and Sylvia had money worries• Social services don’t think they need an

appointee• Staff have helped with budgeting• Sometimes run out of money over the weekend• Now need to be careful about having too much

money in the bank• Would like a holiday

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I am involved in making the important decisions in my life?

• Roger looks after his own money. Choice Support says he doesn’t need an appointee

• Staff go with him to the bank to take money out and pay bills

• Roger made a film about this (Roger’s mental capacity assessment, SCIE SCTV)

• Roger has been told he needs to spend money so he won’t lose his benefits

• Roger is on a personal budget. Not sure what difference it makes

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My health is maintained as I grow older?

• Michael was unwell• The staff didn’t spot it• GOLD group worried when we went away

together.• Michael then got the help of a learning

disability nurse• Medication now better and have a box to

help remember when to take tablets

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My health is maintained as I grow older?

• John has cholesterol so has to be careful what he eats

• Doesn’t like blood tests but his sister helps

• New glasses are expensive so doesn’t have the right ones

• Sylvia helps with going to the doctors

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I feel safe and secure in my own home?

• Betty phoned the police when people rang her door bell

• Social services turned up one evening to talk to Betty about moving.

• They didn’t let her support workers know about this. It was upsetting

• John does not know what would happen if Sylvia had to go into hospital

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I am still doing the activities that are important to me, and trying new

things if I want to ?

• Roger enjoys being busy with activities

• Horse-riding, swimming, pop in, bible study,

• Was a volunteer at the Olympics

• Used to go to City Lit

• Going to Spain this week

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I am still doing the activities that are important to me, and trying

new things if I want to ?

• Sylvia and Michael have been in band for 20 years. This is organised by Andy

• Sylvia has volunteered at the Royal Free Hospital Library for 10 years

• On Wednesdays she goes to different places in London with her support workers

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I am still in contact with the people who are important to me?

• Edna was living in her own flat when she joined the GOLD group

• She had four moves because of her health

• The only people who visit her are the GOLD group

• It can be hard to visit her because she has changed so much. She can’t talk now.

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I am well supported when the people who are important to me

move away or die • John was very close to Corrine

• She got excellent support from the Camden Society

• He went to the funeral and also help scatter her ashes

• He has kept some of her things

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I am well supported when the people who are important to me

move away or die?• Michael lost contact with his father after he

got dementia and moved to a nursing home• Respond helped Michael find his father and

to visit him with Sylvia• The home and respond supported Michael

when his father died• Michael’s father helped set up the Camden

Society• HAIL or social services didn’t know all this

was happening

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I can celebrate my life and am coming to terms with my approaching end of life

• Roger’s didn’t get good support for his 60th birthday

• For Roger’s 68th birthday he took everyone in the GOLD group out for a meal

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I can celebrate my life and am coming to terms with my approaching end of life

• Pat has made a will

• Pat has also said what she wants to happen when she dies

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What we have learnt• Helping to keep friendships is very

important. It takes a lot of time• Support providers need to know who is

important. This can help people keep friends but also stop bad things happening. Betty’s service has been the best for this.

• Social services don’t know people and have done very little to help unless made to.

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What we have learnt

• Services aren’t honest about who is making decisions. This is especially for personal budgets and money

• Services are not helping people make plans for the future

• It is hard to talk about things that have been lost. Sometimes it is good to do this