Response to Scottish Government Self-directed support strategy - Conclusion

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Response to Scottish Government's Self-directed support: A National Strategy for Scotland consultation (pdf)

» Scottish Government - Self-directed support: A National Strategy for Scotland

Consultation body: Scottish Government
Response date: May 2010
Focus of consultation: Self-directed support strategy

Introduction
Key Comments
Results
Conclusion

It is essential that the Self-directed Support Strategy, in conjunction with the National Dementia Strategy, provides a clear message on the direction of travel towards greater personalisation of health and social care so that the majority of people with dementia and their carers have genuine choice and control.

Alzheimer Scotland believes that transformational change is necessary. We are in agreement with the thrust of the draft strategy, and hope that the comments we have made based on the feedback of people with dementia and their families and on our own research, will be helpful in strengthening the strategy in order to achieve the fundamental changes that are needed if the social care system is to become fit for the future.

Appendix 1 - Scribe Notes from Kilmarnock Event

What would make self-directed support work?

More information (dementia and SDS)
A Buddy (an. other) to help & support
Need more connections GP/CPN/SW
Freedom of information
Social work has lack of understanding of SDS
Needs to be positive
Too bureaucratic
It's a myth
Inform GPs of SDS
EAC “blocked” Alzheimer Scotland for a care package
Anomalies – Post Code Lottery
Professionals SHOULD know
Lack of neurologist in EAC
Carers “stuck in the middle”
Crisis management/need information
Having NHS Funding available as part of the package
Someone taking responsibility post-diagnosis – GPs & Consultants should give
nformation post-diagnosis
Clearly define what “exceptional circumstances” are and enable greater flexibility (MPs can employ close family members – why not SDS recipients)
People and systems must adapt

Publicity & Promotion

Information prior to diagnosis
Inform health professionals about SDS, GPs, Psychiatrists
Family members to be supported & directed to where to get help
Readily accessible information for family
Carers Centres/Community Centres – widely publicise
Publicise Self-Referral as option
Simple Straight forward information
Information available from diagnosis
Pro-active – someone to talk us through SDS as an option at early stage
SDS as default position
Promote more generally
Discuss right from the point of diagnosis
Provide information packs for people with dementia and their carers
Promote through Social Work, Government and Local Agencies
Use variety of media including TV, Radio, Literature
Include people with dementia in the publicity and promotional materials
At assessment provide check list for offering SDS and the benefits
Help to recruit private carers might be there through employment agencies
Keep it simple – key information
Age concern network across Scotland seems good can we learn from their model? – Don't re-invent the wheel
Link in with carer agencies

How?

Leaflets
Information packs
Involve family more
Pack with info of other supportive organisations
Co-ordinator within GP Practice to direct people for support
Put literature in surgeries
Automatic trigger point
Support the individual to make the decisions about their needs
Support through process of assessment
One assessment carried out and information shared appropriately
Assessment to be user led not service led
family/representative present when assessment is being done
getting the balance right for the individual being assessed and carers
more use of carers assessments
care agency informed of details in the assessment to be informed of person being cared for
People to have the opportunity to read assessment & challenge the information that may not be correct.
Dementia training to people carrying out assessments
Who should carry out assessment?

What are the barriers?

Communication
What can we do? How can we use it?
Experts professional view can override carers view
Carers not recognised as experts
Assessor not knowledgeable about SDS or dementia
People not recognising needs
Information
Some positives but if's finding them
Positive aspects/superb clinic
Myths about SDS
Lack of awareness
Where information comes from
Finding the right support
Fair & accurate assessments
Not having early intervention impacts on the person being cared for & the carer
Fear factor
Eligibility criteria
Jargon & negativity of information
Lack of awareness of SDS
Eligibility criteria
Finding the right support
Negativity & myths about SDS
Fear factor
Lack of early intervention impacts on the carer & the person being cared for
Not having a fair and accurate assessment
Jargon
Employing staff – red tape
Financial monitoring
Lack of peer support
Length of time the process can take
Simplify the process
Balance needed – still have time to be daughter/son/wife/husband
Someone needed to help set up support required
Don't want stress of managing direct payment
Limited budgets within local authorities
Having the time to find out/investigate whilst caring
General lack of awareness in public about dementia can delay person receiving diagnosis/asking for help
Years after diagnosis people still unaware of SDS
No information about SDS
Not being offered a Direct Payment
Lack of clarity of information/guidance
Inconsistencies across areas
Issues arising from consent and power of attorney
Some benefits not available to under 65's
Waiting lists
Misinformation
Postcode lottery
Social workers don't know enough about it
Co-production doesn't exist
Services decided for you not with you
No shared care approach between services
Lack of transparency (personal budgets – resource allocation)
Too service led – needs to be personalised

5 years from diagnosis and still no knowledge of SDS
No-one with dementia in the publicity materials
Age discrimination
No choice given – day care only option offered but not right for everyone causing frustration and upset for whole families
Loss of privacy and control
Within day care experienced no choice of activities
Assessments not shared with person with dementia and families
System to slow from need to payment – need to get in early to be successful
MMHS form is poor indication to determine when support needed score and abilities don't always match
People don't know what they are entitled to and therefore don't take it up
Sometimes person with dementia says no help needed and people withdraw
Information is currently not getting through at present
Having someone like Yvonne is great [SDS Pilot Project] but not everyone has one – who else can help?
Use sources of good publicity – TV, football stadiums, information boards
Social workers should be telling people

Overcoming the barriers

Employing staff
Help to be creative
Hearing about other peoples ideas
3 levels – Strategic – Someone to do help – someone to help round the system
Very detailed person care plans of what works for individual BUT who do you give it to – who does it like you!?
Individual champions and seeing positive examples
Plain language
Peer Support for people new to SDS
Maintaining Continuity with Staff
Payroll – HR Issues eg employment law
Voluntary Organisations can campaign/lobby Government to unlock resources
Often limited to budget existing – free up resources
Importance of timing – right time is not when in crisis
Give examples of how it can be used
Essential that information provided at earliest opportunity
Direct payment – doesn't require capacity – someone else can act on behalf of person with dementia
Should be triggered automatically if health/SW become involved as part of assessment
Statutory duty to offer SDS being carried out everywhere
More early intervention
Change eligibility criteria
Improve joint working approach by health and social work
Information about how it might affect Pension Credits/benefits of people recruited i.e. friends
Letting people know how much they will receive
Reduce complications – simplify the process
Provide more information (too many questions – not enough answers)
Information starts with the person with dementia, their families, friends and then the wider society

Future development/our priorities

Knowing who can support you through the process#
Less red tape
Opt out policy to be addressed
Make SDS more positive and Transparent for everyone
More personalised services
Need flexibility in how we budget to best meet outcomes – times/types/who provides support
Eligibility from onset of dementia if there are needs – preventative support
Information available from diagnosis with person to help explain/guide through process/answer question
Simplify the process and information
Easy monitoring system
Free up resources from Health and SW
Need more consistency
More Information and publicity
More support available through the process
Information must include structure and mechanics of accessing SDS
Provide information and support at diagnosis
CHOICE
Raise awareness that SDS is a possible option
Tell people what they are eligible to receive
More knowledge about power of attorney
Clarity of how eligibility is decided
Make sure we don't create a new monster by “individual care” agencies growing

What can we do?

Communication – talk talk – inform
Inequalities – cancer v dementia
Different levels of support from Social Workers
Carers need to raise voices
Carers need education
Professional – SSA 4 Not needed- Barrier
Ensure Time off for main carers
Making sure voice of person with dementia/carer heard by health/SW professionals
Opportunities to meet others in same position – support groups
Pro-active approach to provide information on role of professionals/services
Make sure information put in Carers Support Centres
Peer support
Provide specialised agencies and teams
Provide support to prepare for assessment etc

What does SDS mean at the early stages of dementia – planned approach

Early intervention preventing crisis situations
Early intervention encourages relationship build up with support staff etc…
Lack of services for people under 65 yrs
Services should be available to anyone regardless of age
GPs not having information to pass on
Information to be simplistic
To have specialist within access from GP
Home visits
Sensitivity with information
Fairness in having access to information
Importance of early diagnosis
Leaflet on Alzheimer Scotland Helpline
Loss of confidence for person with dementia and so may not say what/how support should be provided
Important to listen to person with dementia/family
importance of choice and flexibility, time for person with dementia to build trust/familiarity/confidence
help with recognising what support you would like in the future
Not everyone will need formal support
Support and information on SDS and discussions before eligibility criteria met (planning for the future)
Regular reviews as needs change
Face to face support available straight after diagnosis
Panic attacks caused by fear – lack of information
Give me information about SDS following diagnosis
It is hard to know what you want at this point
Need information about dementia
We should never be left with nothing
Time for the person to come to terms – needs more than 1 visit – longer term involvement
Persons perceptions of difficulties may be very different from carers “I'm fine”
Information very, very important

What does SDS mean at the mid-stage of dementia?

Provide social support at the right time for the person (more personal control)
Accessing PAs & befrienders
Clubs
Providing support to do what they always enjoyed doing
More awareness and information on what is available in communities
Community resources Centres
Better sign-posting
Diverse Range of Community support on offer
Carers Centres
Both dementia specific and generic resources
Ability to maintain everyday experiences, shopping, clubs etc….
Access to assistive technology
Access to small changes in home environment
Need more information on technology and equipment available
Person with dementia needs to have access to support to go to activities and families need the time to have a break from caring responsibilities
Person with dementia needs support to remain at home while family members are out (VERY IMPORTANT)

What does SDS mean at the advanced stages of dementia?

Assessments at every stage as dementia progresses
Flexibility to increase support from services to keep carer healthy & supported as well as stimulating the person with dementia
System lets carers down – System needs to change – Improve the system
Educate carers regarding services available ask about what is available
To have known about SDS before the advanced stages
More funding available for care within the home!
More control of care EMPOWERS
Hospital to nursing homes (not always appropriate)

Improvements we wantSocial Services

Timing the involvement of support
Having peer support
Information pack with resources
Available Information
Want some support and guidance from SWD
Provide more Training to frontline staff

Health Services

Limiting waiting times between specialist appointments
Conflict of information being given between Government & NHS
Follow-up appointments following diagnosis from CPN etc
Provide more training to front-line staff
Give same service that people with diabetes etc…monitoring, advice, support,
Information – not left alone to cope
Give information about Alzheimer Scotland and SDS

Help to Maintain Lives & Natural Supports

Fairness in supporting the carers
Person supporting the person being cared for are better at getting other help for the individual
Access to carers need of information/respite
Community involvement / resources
Community planning & supporting communities
Enabling people to feel comfortable within their environment
Supporting personal interests
Enabling people to maintain dignity throughout
Independence
Risk enablement for individuals
Have more positive publicity on Dementia
Positive models to inspire others
Support the person with dementia and family to go through the process
Process currently via care manager
Use of assistive technology to help maintain independence (can ask LA for assessment of need)
Person with dementia must want support
Thinking creatively
Respite at home
Supported holidays for person with dementia
Small budget for 'Buddy' for social/leisure
Information on state benefits – Income maximisation ~(LA/DWP)
Information to empower (booklet, someone to talk to)
Importance of GP signposting to agencies/services that can help provide information
Need to reduce stigma
Alternatives to Long Term Care
Flexible working hours needed
Accessing money quickly as debt causes further stress
Younger people can be overlooked
Younger people can be natural peer educators
Many local networks out there and could be used to raise awareness
SDS should be used to enable family and carer to continue to lead “usual life”
Have a fund to pay someone you know or pay expenses rather than pay a stranger
Funding to meet personal outcomes
Acknowledge the support that is given by families
Preference for a family group to care for some
Importance of faith
Natural supports can last longer
Using internet and libraries

Planning Future Care & Support

Different types of dementia requires different types of assessment
Evaluating services regularly
Continuum of positive guidance & Support
Advance directives at early stages
Addressing Power of Attorney & Wills
Limit to red tape – simple information for people to understand
Personalise care to the individual needs
Carers to be informed of details in assessment
Support should be person centred
Help to build confidence and develop knowledge of SDS
Option for follow up contacts – weeks/months later when Person with
dementia wants/is ready for information – someone knowledgeable
Role of dementia specialists nurses/Macmillan model of developed
Using new technology – how to find it
Family members could take on more
Encourage to do what person wants = full life
Don't turn home into an institution
Timing issues – even being in time to shower someone can be hard work
Importance of POA
Importance of recording needs/wishes of person with dementia/memory book
Importance of making decisions for future
SDS as Enabler
Alzheimer Scotland hitting the ground running with information and dementia advisors - must bring other on board
Carers/Professionals can take over and speak for person with dementia when they are able to talk for self
We need support earlier – needs not always seen as “support”
SDS should enable individual support arrangements and avoid “block booking” service
The Quality of care is important
A life of adjustment and we are adjusting but need help to educate others
Go by what I do – not what I say
You would get a better assessment by watching the individual rather than a verbal assessment
Monitoring important
People must know what they are entitled to – how much they can get
Carers must have a life too
Carers often “take up slack” and provide a lot of “hidden support”

Appendix 2 - Questionnaire responses

39 responses

1. Had you heard about self-directed support before the event

23 had heard of SDS; 16 had not.

2. If yes, how found out about it

9 heard of it through voluntary sector agencies.
5 had been informed by their social worker or health professional.
6 had professional awareness.
1 found out through Internet search on dementia, 1 seen it advertised and 1 found out through a SG consultation event.

3. Do you know what direct payments are

21 knew about direct payments.
9 did not know about it.
9 were not sure.

4. If yes, how found out about it

7 found out from social work or health professional.
7 found out from a voluntary sector organisation.
3 knew about it professionally.
2 found out through SG consultation event.
1 knew a friend who received it.
1 non response to question.

5. Used a direct payment

Only one respondent had used a direct payment.

6. Reason for coming along

11 wanted to find out more about SDS.
3 wanted to find out more about direct payments.
3 wished to give their views on the development of SDS strategy.
1 came along to provide support.
21 had more than one reason, including finding out more information and giving their views on the development of the SDS strategy.

7. Additional comments

There is no information on the stage SDS or direct payments would be applicable.

At beginning of this process; will be discussing SDS with social work to establish this from the outset.

GPs and care teams should be engaged with the feedback from this process so it is not lost.

Need for more information to be made available to the public.

8. About you

5 people with dementia.
21 carers (or former carers).
6 professionals.
3 friends of person with dementia or carer.
4 non responses.

Appendix 3 Evaluation form responses

37 responses

1. Reason for coming along

30 came along to find out more about SDS, direct payments and other information for people with dementia.
3 professionals came to support.
4 came to gain information to pass onto their colleagues and/or organisation.

2. Have your reasons been met

25 felt their reason for coming along had been met.
12 felt it had been partially met.

3. What would you like outcome of today to be

Better information, easier access to support, for people to be treated as individuals, more people being able to access direct payments, comprehensive guide for carers and professionals, SDS widely available and understood

Feedback from today to be taken back to appropriate people, so that positive action is taken; information from today being acted on by the Scottish Government

4. About you

4 people with dementia.
22 carers.
6 professionals.
1 friend of person with dementia.
4 non responses.

Response to Scottish Government Self-directed support strategy