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Department of Health

Care Act 2014: How should local authorities deliver the care and support reforms? Please give us your views


Question 80: Should we seek the patient’s consent to pass their contact details to RNIB, as well as to the local authority, as part of the CVI process in order for RNIB to offer advice and support?

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17 comments

  1. Anonymous says:

    At the same time as seeking consent for the person to be added to the register the LA should ask if they may notify the RNIB as well as any local charities for the blind and partially sighted.

  2. Anonymous says:

    Visionary welcomes the recognition given to the challenges faced by people with sight loss and the crucial role that charities play in supporting them. We also welcome the principle of seeking patient consent, as part of the CVI process, to pass their details onto charitable organisations in a position to offer advice and support so that they can, if and when they wish, access that support.

    This would be a great step forward – newly diagnosed clients often say that knowing where to go for support was one of the first hurdles they had to overcome, a hurdle they could have done without.

    However the RNIB is only one source of advice and support, and in many parts of the country has no-one ‘on the ground’ to support people – unlike, for example, local societies who not only have local knowledge, networks, facilities and expertise to support those with sight loss in their areas; but are often the organisations most likely to be offering and delivering that support ‘on the ground’.

    Likewise, there are also other national sight loss charities that might, in some circumstances, be more appropriate for the patient – for example Blind Veterans UK.

    We would also suggest that local hospitals are perhaps best placed to advise patients on the support that’s available in their area, and that the guidance should be re-worded with these points in mind.

    Accordingly we would suggest adopting one of the following in place of the current Question 80 wording:

    “Hospitals, as part of the CVI process, should seek the patient’s consent to pass their contact details to the relevant local sight loss charity and/or national sight loss charity.”

    Or

    “Hospitals, as part of the CVI process, should seek the patients consent to pass their details onto local and/or national sight loss charity of their choice”.

  3. Anonymous says:

    The patient should be consulted with and offered advice and information on how the RNIB and the local authority can assist following their sight loss registration. Once the advice process is undertaken appropriately (including explanations of the implications of passing the information on to RNIB and the Local Authority and what it could mean for the patient), then consent should be sought.

    Lack of consent could have a detrimental effect on the Local Authority’s ability to register the client on the internal data base as sight impaired and would affect the quality and accuracy of the information held on the register and subsequent reporting information. This may also affect the local authority’s ability to appropriately consult with and include residents of Gateshead who have sight loss.

  4. Anonymous says:

    The (Healthwatch Northumberland) group felt that to be able to provide services, you need to know who the users are, however, felt that the registers must be transparent and agreed that admittance onto these registers should be voluntary to allow people to maintain their independence.
    The group also felt it was necessary to understand the purpose of the register.

  5. Anonymous says:

    The Certificate of Vision Impairment Committee (CVIC) believes that consent would need to be sought in order to pass contact details to the any other third sector organisation. CVIC is strongly supportive of consenting patients being provided with early advice and support from the third sector, how this can be achieved requires further discussion and should involve the third sector (for sight loss) as a whole and indeed patients with recent experience of the certification process in discussions.

  6. Anonymous says:

    The Certificate of Vision Impairment Committee (CVIC) believes that consent would need to be sought in order to pass contact details to the any other third sector organisation. CVIC is strongly supportive of consenting patients being provided with early advice and support from the third sector, how this can be achieved requires further discussion and should involve the third sector (for sight loss) as a whole and indeed patients with recent experience of the certification process in discussions.

  7. Anonymous says:

    From Newcastle Society for Blind People
    It is important that people get local support as soon as possible after being told their diagnosis. The RNIB provides excellent information through its website and other information formats. However, RNIB do not offer local follow services which are usually provided by local sight loss charities – many of whom ( like ourselves ) are often long established.

    We work closely with RNIB in active partnership working. Many of our members are also RNIB volunteers .We are very clear between us where the respective boundaries of responsibility are in supporting local people and we actively signpost people to RNIB Solutions and their campaigning service.

    Our job is to provide local services e.g. contact services – our extensive sight awareness course, outreach, counselling and ring round services, empowerment activity through self and group advocacy on major issues such as Transport and Employment as well as learning and social groups such as our IT classes and Macular Degeneration group.

    Therefore we agree wholeheartedly with other commentators that it could be useful for anonymised data to be passed to RNIB so they are informed of local statistics in terms of demographic information and fuelling campaigns to bring national influence on Government policy.

    However, as noted above, they are not direct care providers and therefore we do not see the need for them to be handed full patient contact details. In our view, the way forward is for:-
    • With patients’ consent, full details should go to a local sight loss support provider – usually the local sight loss charities .We would further argue that If there is more than local sight loss charity there should be agreement for one to take the lead BUT to signpost to others as necessary
    • Patients to give their consent for full details to be passed to a national charity of their choice .We take one commentator’s point that there are more organisations than just RNIB or Action for Blind People working at a national level and that some may be more specifically relevant to a person’s needs such as Blind Veterans UK.

  8. Anonymous says:

    We are NSBP Newcastle upon Tyne’s local society for blind and visually impaired people.

    We work closely with RNIB in active partnership working. Many of our members are also RNIB volunteers. We are very clear between us where the respective boundaries of responsibility are in supporting local people and we actively signpost people to RNIB Solutions and their excellent campaigning service.

    However, our job is to provide local services e.g. contact services – our extensive sight awareness course, outreach, counselling and ring round services, empowerment activity – such as self and group advocacy on major issues such as Transport and Employment as well as learning and social groups such as our IT classes and Macular Degeneration group.

    Therefore we agree wholeheartedly with other commentators that it is useful for anonymised data to be passed to RNIB to be informed for local statistics in terms of demographic information and fuelling campaigns to bring national influence on Government policy. However, they are not direct care providers and therefore we don’t not see the need to be handed full patient contact details.

    We further agree that RNIB do not offer local services which are provided by local sight loss charities – who are often long established.
    The solution should be
    • It is important for anonymised national data to be collected though there is a system in place for this already. We must however ensure these arrangements stay.
    • With patients’ consent, full details to local sight loss charities so they can offer local support. If there is more than local sight loss charity there should be agreement for one to take a lead BUT to signpost to others as necessary
    • Patients should also be able to consent for full details to be passed to a national charity of their choice .We take one commentator’s point that there are more than just RNIB or Action for Blind People at national level and that some may be more specifically relevant to a person’s needs such as Blind Veterans UK
    Marjorie Prince
    Chief Executive

  9. Anonymous says:

    Contact details should be passed onto Moorfields Certificate of Visual Impairment Team for them to send out local and national support information not particularly RNIB.

  10. Anonymous says:

    I feel that it is very useful for the RNIB to be informed of local statistics in terms of demographic information and Government forward planning. However,as they are not direct care providers I fail to see the need to pass on patient contact details. To gain consent for contact details to be passed implies that action would be taken and can lead an individual to have expectations that are not realistic. In my experience direct care is provided by the Local Authority and a local charity,so I am left wondering in what capacity RNIB would be involved.

  11. Anonymous says:

    I am the Chief Executive of a local blind charity, Sheffield Royal Society for the Blind, and do not believe it would be appropriate for patients to be asked for consent to be passed JUST to RNIB. RNIB do not offer local services and in many parts of the UK services are delivered by local sight loss charities. Whilst it would be more cumbersome from an administrative perspective, patient details being passed to the local sight loss charity would be of more direct benefit to patients in many parts of the UK.

  12. Anonymous says:

    I would like to point out that locally, as far as the communities of Shropshire, Telford & Wrekin are concerned, RNIB has next to no presence on the ground. Much as I understand and respect the work and status of RNIB at a national level, the fact of the matter is that RNIB does not connect with local people with sight loss to provide the information, support and advice in the way that we are able to – because we are the local society for the blind and visually impaired people. Sight Loss Shropshire, has been fulfilling the role of providing information, support and advice to blind people locally since 1922. We possess, maintain and support an extensive network of user groups and volunteers that reaches people with sight loss across the villages, market towns and the larger urban centres of Telford and Shrewsbury, across a very large but lightly populated geographical area. We do, of course, signpost people to any agency that is best able to provide the help they want or need, and most certainly that includes RNIB for their products and sources of information. But RNIB simply does not have the personnel, paid or voluntary, here on the ground, and in the local communities, to begin to replicate the work we do.

    Under the circumstances, it would be more logical, and of greater practical benefit to the patient, that he/she be asked to provide consent, when registered CVI, to pass details to his/her local society for the blind.

  13. Anonymous says:

    I think it depends on what is trying to be achieved.

    The RNIB is a policy, campaigning and fundraising organisation at heart, and I value the work that they do on the national agenda.

    In terms of support and contact with local people with sight loss, then it is the local organisations who have this reach, not the RNIB.

    So if the passing on of information is to improve the support that people with sight loss receive, then this should be to the local organisation or to ‘visionary’ the umbrella organisation for local sight loss charities.

    If this is about collecting anonymous national data then there is already a system in place to do this, and a separate consent is not required.

  14. Anonymous says:

    I feel that giving RNIB details of patient information risks displacing the many highly valued, locally based organisations which provide much needed services to people in need. This proposed policy seems to be at odds with the Government’s espoused intention of encouraging voluntary sector organisations to lead on locally based responses to ensure people in need receive the best service possible.

  15. Anonymous says:

    I feel that this would not be the best course of action. I feel that giving the patient their course of options for obtaining advice, support and guidance on the issues they are facing, would be far more beneficial for the individual.This would mean providing them with the details of all of the sightloss organisations who could provide them with suitable advice and guidance. They would then be able to make an informed choice on the organisation that they would like to work with.

  16. Anonymous says:

    I work for the Warwickshire association for the blind. We provide the vast majority of services for visually impaired people in their own area. This is true of all the local societies. The RNIB are a campaigning organisation. Action for blind people, who are part of the RNIB Group provide regional services either online or by telephone for the most part. They offer advice on Education benefits, employment and on technology. They also offer telephone counselling support for a set period.
    Over 80% of people who suffer sight loss are over 70. The local societies cater better for this group than Action. In Warwickshire we offer 7 weekly Drop-In centres across the county. We attract people of all ages including many with learning difficulties or mental health issues. The Drop-In`s offer advice, information on services and referrals into the same. In addition they house comprehensive displays of equipment for demonstration and purchase. There are regular presentations and groups including Advocacy and Young Adults. 15 Clubs, visiting services for people who are isolated and the offer of trained escorts to enable visually impaired people to go and do activities. We also support people to use online services through mobile phones, tablets and computers in their home. We have over 300 volunteers helping us support visually impaired people to stay independent in their own homes
    If you are going to inform one organisation it should be the local Society and not RNIB. The local societies are the organisation that support a person in their home

  17. Anonymous says:

    There are multiple organisations able to help people diagnosed with sight loss, and those best able to help are in many cases, those with local knowledge, expertise, and facilities. RNIB and its subsidiaries, whilst having many strengths, do not have universal local capability. Local sight loss societies have in many cases existed for decades and have extensive local knowledge, networks, facilities and expertise to support those with sight loss in their local populations. It should be the case that the local eye hospital staff and / or Local Authority are best placed to advise the patient on local services and providers that can best help them. Seeking patient consent to pass their details exclusively to RNIB as a sight loss organisation will undermine the ability of local societies and other local organisations to support those newly diagnosed with sight loss, and importantly deprive the patient of choice and speedy local access to services. If additional consent is to be sought from the patient, then it should be for their details to be passed to the relevant local society and to other national sight loss organisations of their choice, e,g RNIB / Blind Veterans UK etc. However in almost all cases local societies are well networked, provide an array of information from the sector, and if appropriate do sign post people to the optimum support to meet their particular needs if they cannot meet them.