Action from June 2012 meeting of the Macular Interest Group to provide an overview of any activities from Vision 2020 groups and others to understand and challenge the problems that low vision and rehabilitation services are experiencing.
Issues & context:
For the last 10 - 15 years largely the same or similar issues to the challenges of today around the provision of low vision and rehabilitation services. Little national progress only pockets of good practice and innovative approach to services – which can be cost effective! Service funding cuts, increased demand on services, fewer resources of all types can only lead to further deterioration.
Best- practice/ gold star services do exits. Person-centred, holistic multidisciplinary services. Actual outcome focused not numbers through the door without real long term functional and emotional benefits. Pooled funding pots – health, social care. Local society etc. Local champions driving service developments and innovation. True partnership working. Recognising that preventative approach more cost effective in long run to society (not one element of a budget). Falls prevention, retaining independence – less need for costly, long term care packages such as residential care, meals on wheels, paid carers for daily living activities.
Today’s discussion: What can be done to effectively tackle some or all of the following issues? Update on current activities and some of the approaches that have gone before – can we build on this work and/ or do we need new ideas?
Issues (in addition to the obvious service cuts, lack of resources, increasing demand):
- ‘Standards’ and Outcome frameworks that have been developed have been guidance not statutory, even if organisation/ local authority adopted not enforceable or appropriately monitored.
- Long standing calls for more person-centred, holistic multi-disciplinary working. Still rarely happens.
- Low vision and rehabilitation still only offered too late seen as last resort. No need to wait until all treatment options exhausted or until registration. Parallel not linear referral.
People lose confidence begin to give up, uphill struggle to learn new skill and overcome depression etc., Early intervention and support – better outcomes. Easier to learn how to adapt to and use new skills and equipment earlier
e.g. starting with low powered magnifier and good lighting (larger lens, improved working distance etc and progress to higher powers as needed rather than start with tiny high powered lens – working distance at end of nose
- Lack of understanding by range of professionals of importance and benefits of LV and rehabilitation and of each others roles in ‘signposting’ and providing support.
- Impact of sight loss under estimated by public and professionals.
- Variable quality and availability of services – ‘postcode lottery’.
- Barriers to accessing services – individuals don’t know what is available or how to find out. Restrictive pathways into services with rigid reviews rather than open access when difficulties experienced and review as needed and circumstances change.
- Individuals grateful for any help even if the service provided is of poor quality – so don’t challenge for better.
- Long waiting lists for even minimal services.
- Low priority for commissioners and lack of understanding of impact of sight loss. Work locally to raise awareness, get sight loss in JSNAs etc but as soon as one commissioner ‘educated’ – they move on.’
- Lack of understanding and confidence in how services will be commissioned, funded following CCGs, health boards, professional networks etc. Everything up in the air and service development or implementation on hold in definitely.
- Far more people with low vision than no vision but even less voice.
- It is great that there has been an increased level of attention on prevention of sight loss and preventative eye health but when sight loss cannot be prevented nothing about preventing reduced quality of life or reducing the long term economical impact.
- Historical funding of services e.g LV often health not social care yet in reality LV & rehab should be closely linked to be most effective – no clear cut-off/ distinction. Not ‘ring fenced’ for a service – ophthalmology budget. Increased demand eg current anti-vegf treatments reduces funding elsewhere.
- LV - quick appointments – “too many magnifiers in two many drawers”, person not helped to use vision more effectively, how to use magnifiers and lighting or ‘Big, Bright Bold’ concepts. Not what can be done in combination to help this person to do what they actually need and want but rather in clinical situation (not real) person can briefly read x font with this magnifier - off you go.
- Poor dissemination and adoption of good practice.
Rehab/ social care:
Historic activities attempting to address similar and in many cases exactly the same issues – replicated in many current activities:
Progress in Sight – National Standards of Care for Visually impaired adults published 2002, widely supported and ‘adopted by local authorities. At 1 point 160 organisations ‘signed up’. Improving Lives coalition group (had some DoH - Section 64 funding). Tried to:
1. Encourage partnership working
2. To improve good practice concerning the provision of Health and Social care services for people with sight loss.
3. To improve the resource provision (inc community equipment).
4. Wanted to achieve improvements in referral pathways to social care and break the medical model.
5. Wanted to challenge the lottery of support
6. Wanted to ensure the development of a modern rehabilitation profession:
a. Core Competencies and CPD for rehabilitation worker role
b. Develop rehabilitation theory/practice
c. QA standards and ensure adequate resources
d. More User evaluation and influence
followed by:
Good practice in Sight (2008/9) – How excellent services for blind and partially sighted adults can help local authorities meet their performance targets. Was supported by ADASS
Good practice bench marks – 9 areas including emotional support, referral, information & advice, assessment of need, dealing with complaints service user involvement. Case studies and how these benchmarks reflect national indicators and new permormance indicators for local authorities.
followed most recently by “See it my way” - outcomes
Current activity update:
· Indicates group focus/ activity.
Vision 2020 – Future of rehab group
Formed towards the end of last year to address the growing number of issues facing rehabilitation. Representatives from various charities and local government from around the UK.
Update from Simon Labbett.
· Recent survey mapping how many ROVIs providing a service in a region - results summarised in NB article July, further detail on SCA website. http://www.socialcareassociation.co.uk/Default.aspx?tabid=119
Results
The survey estimates that there are some 600 or so ROVIs in the UK. Some 400 of these work under contract for local authorities in England, 30 in Scotland, 40 in Wales and 25 in Northern Ireland. That averages out at around three for each local authority, but in some there are more and some less (and not necessarily full time).
Number of ROVIs to population:
1 authority in:
SW 1 ROVI : 67,000 population
London borough 1 ROVI : 54,000 population
NE 1 ROVI : 311,000 population
East Midlands 1 ROVI : 683,000 population
A lone worker might assess and work with around 100 new cases following certification as sight impaired/ severely sight impaired a year. This does not include those who need ongoing support, or new potential cases that don’t have a CVI or BD1 or needing review following a change in circumstances.
· Looking at registration of ROVIs.
Wales registration supposedly underway - unknown delay. Other 3 countries would only be voluntary registration. Scotland expressing reservations. Workers with VI children have set up a voluntary register but it is not assurred.
The health and social care bill has now provided a mechanism for assured and voluntary registers. Anyone can hold register. SCA considering and interested in taking forward.
[From minutes of SCA Rehabilitation Workers Consultative Network also looking at issues within rehab. Last meeting 5/4/2012 next 18/10/2012.
Under the Act the QUANGO CHRE are responsible for defining and regulating voluntary assured registers so that they can be seen to offer the public proper safeguards service users This was when it was agreed for SCA to investigate possibility of holding register. If they decide to continue with this unlikely to be operational before January). Waiting for further report from CHRE regarding costs – due to report late August].
Under the Act CHRE are responsible for defining and regulating voluntary assured registers so that they can be seen to offer the public proper safeguards service users
Prof registration (England) - to be raised formally in August with ADSS - asking if registration pursued (voluntary) whether employers would endorse registration as a good thing actively sought from employees eg safeguarding, protects both way.
Initial estimates for SCA to hold £11K / work force. If all sign up to voluntary register works out £60 - £70 a head. If not looked for by employers/ ADSS people may not bother. If HPC takes on the a register charges would be at least double.
· If things going awry in an area eg services cut individual cases being notified to Phillip Connolly RNIB (Steve Winyards team) is following up each story locally, speaking to commissioners. Have tried to get an update on these cases from P.Connolly but we keep missing each other. SL thinks recent issues were in Derby, Bury and London but not certain.
[Through work with CVI review group last year I anecdotally know of a London area used to have 5 rehab team members down to one part-time worker who for some of that time spent dealing with calls on main switchboard. Another London area team disbanded but CVIs from across the area were still being sent to old office].
· Following development of “ See it my way” outcome measures. The group have launched a ‘Pathway consultation’. closes end of August. England only - countries supposed to adopt later ideally.
The draft pathway talks about specialist worker & specialist assessment rather than ROVIs.
· Group have also been considering threat to future role due to loss of training for new ROVIs. Failing course, increased fees from other course providers. Reduced number of local authority funded places.
In addition SL concerned about the widely held misconception regarding provision of rehab & eligibility criteria (most areas critical or substantial). Rehab should not be part of this at least initially – fits under re-enablement.
Re-enablement services VI or not being offered too late. Preventative and re-enablement measures should be offered before long-term needs and personal budgets/ care packages established or implemented. Don’t need to worry about eligibility criteria until later.
[At least two people in a recent teleconference the Macular Disease Soicety hosted involving ROVIs and ROVI training course providers were talking in terms of critical and substantial eligibility criteria as barriers to providing rehab.]
SL has agreed to do an article for Digest on activities of Future of Rehab group and to raise awareness of this misconception around re-enablement and longer term assessed needs for care packages.
Guide Dogs update:
Not currently funding anything with respect to vision rehab services, either campaign or research wise. They are considering repeat the Functionality and Needs Survey that was undertaken in 2007 - or elements of it – possibly in 2013/2014.
Low Vision
Historic activities attempting to address similar and in many cases exactly the same issues – replicated in many current activities:
Various campaigns identified to drive improvements in services. Limited impact.
Reports:
Fragmented Vision – Survey of Low Vision Services in the UK (1999)
Our Better Vision – What people need from low vision services in the UK (1999)
Low Vision Services – Recommendations for future service delivery in the UK (1999).
Led to the formation of local/ regional Low Vision Committees and what is now called the Low Vision Services Group (National).
Following DoH funded pilots LV standards were developed and launched in 2007. But guidance rather than standards – optional. Good practice from pilots poorly disseminated. Models not rolled out nationally as hoped. Lots of money thrown at pilots but never anything for wider implementation.
LV service contact database – existed from original mapping of services. No information on type or quality of service. Used to be hosted by RNIB – relied on an individual service contacting RNIB to say details had changed – became very out of date. A later mapping exercise never published and information could not be used to update the database. LVSG have long wanted to revisit the concept but no resources or ability to maintain. Information probably available in pieces across sector. Seems impossible to collate/ share this type of information or to carry out extensive mapping of services. Even if data could be collected initially no one has resources to maintain or willing to take ownership and still allow access to the whole sector.
Guide Dogs produced a guide/directory of various sight loss related services in 2010. Not interactive – impossible to be exhaustive. Few if any low vision services listed.
If an individual wants to know where their local low vision service is – necessary to make a series of enquiries locally and hope that one is able to tell them where and how to access e.g. GP, sensory impairment team, local society for visually impaired people, local eye department. Unlikely to be informed of options or what to expect.
Current activity update:
· Indicates group focus/ activity.
Vision 2020 – Low Vision Service Group (LVSG)
Sub- groups: BME & children’s LV (have developed a version of the 2007 Low Vision Standards tailored to suit the needs of visually impaired children but not possible to get endorsed or recognised by DoH or in any other formal way).
1 p/t ‘employee’ - Low Vision Officer for the Low Vision Services Committees involving service users, commissioners and health/ social care professionals, service providers at a local level often town or county. Less than 80 believed to be active some are evolving into broader eye care advisory groups.
Chair retiring – new person yet to be identified. Suggested review of Terms and Condition (again) upon new chair being selected.
Last meeting 2/5/2012 next meeting 22/10/2012
Last meeting:
- Concern raised over sheer number of LV groups that now exist with limited communication and co-operation between them. Apparent lack of holistic, service-user led, multidisciplinary approach.
· LOCSU LV pathway (contract rather than service user focused)