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IN TOUCH 鈥� The State of Vision Rehabilitation Services

TX:听 19.03.2024听 2040-2100

PRESENTER:听 听听听听听听听 PETER WHITE

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PRODUCER:听听听听听听听听听听听 BETH HEMMINGS

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White

Good evening.听 鈥淰ision rehabilitation is a forgotten under-resourced system lost among the many pressures facing local authorities.鈥澨� Not my words but those of the latest in a series of RNIB reports, which, for the past 20 years or so, have been tracking what it sees as a serious decline in the help given to newly visually impaired people to learn the many skills which can help them cope with this very major change in their lives.听 Things such as moving around safely, running a house, learning about the technologies which have been revolutionising the way visually impaired people communicate.听 The report says people are now often waiting months, sometimes years, for the professional help which should be available to them by law.

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Well, tonight, we want to examine the report鈥檚 findings but go beyond that to discuss what can be done to change the situation and to look at what alternatives there might be if local authorities are no longer in a position, financially, to offer this help.

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Let鈥檚 hear first from David Aldwinkle from the RNIB.听 David, tell us a bit more about the report, how did you conduct it and what did you find.

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Aldwinkle

This report Out of Sight was based on a freedom of information request to local authorities in England and some work speaking to more than 400 blind and partially sighted people showed that there are thousands of people who either aren鈥檛 getting their support that they鈥檙e entitled to 鈥� and remember this is a legal entitlement 鈥� in a timely manner, i.e. within 28 days of diagnosis or sometimes actually not getting it at all.听 And we found that nearly half of the people we spoke to weren鈥檛 getting the help they needed in their lifetime at all.

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White

I mean it sounds as if you think this is getting worse.

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Aldwinkle

The whole situation within the system, we would anticipate, is getting worse but I think that鈥檚 primarily really driven by the pressures that are on local authorities.听 But what doesn鈥檛 kind of help the situation is that over those years we haven鈥檛 really stopped vision rehabilitation becoming that forgotten service, that you referenced at the top of the programme Peter and without better oversight nationally it鈥檚 going to be allowed to carry on.听 There鈥檚 huge variation across the country with some local authorities actually doing well, we have to recognise that and then variation depending on where you live, ranging from 86% of councils said that people were waiting more than the recommended 28 days but there was within that a quarter of councils said that people were waiting over a year and that鈥檚 really, really unacceptable in our view.

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White

Was that waiting for over a year for assessment or to get some kind of rehabilitation?

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Aldwinkle

That was waiting for more than a year to get an assessment.

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White

So that after the assessment then you have another wait in order to get rehabilitation, presumably?

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Aldwinkle

We think the help follows reasonably well after the assessment but it鈥檚 getting to that point which is the real challenge.听 It鈥檚 the only area of social care really that isn鈥檛 regulated and doesn鈥檛 therefore fall under an inspection regime, we think that could be a very straightforward step to making things better.

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White

Well, David, we鈥檒l come back to you on this and the solutions but first of all, what does this mean to those who are waiting patiently, some of them impatiently, for this help?听 We鈥檙e joined by Eloise McBingham.听 Eloise is 21, she鈥檚 based in Wigan.听 Tell us your situation and what kind of help you need.

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McBingham

I鈥檓 a mother of a one-year-old and I鈥檓 currently struggling with sight loss 鈥� retinitis pigmentosa.听 I鈥檓 struggling going out and being myself, that I used to be, I can鈥檛 do things that I used to do.听 And it鈥檚 quite hard.听 It not just affects me, it affects people around me too because it鈥檚 putting a lot of stress on my friends, my family.

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White

What have the delays been like?

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McBingham

They鈥檝e been quite traumatic because I鈥檝e had eye surgery about five days ago, so I鈥檓 currently fully blind, I can鈥檛 see nothing.听 I鈥檝e been waiting for the health assessment at home, being able to move around my home safely.

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White

Can I ask you, how difficult is it to know actually who to contact because it鈥檚 quite a complicated system, isn鈥檛 it, in that you鈥檝e got health, you鈥檝e got social care, how difficult is it for you to know who to nag?

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McBingham

It is quite difficult.听 You ring all over the places and people tell you to go to certain people and then you get pushed back and then you have to get sent through other people.听 So, it鈥檚 been quite a ball game to get to the right point.

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White

And I just ask, what does your local authority say to you when you try to speed things up?

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McBinham

That there鈥檚 a waiting list of a year and a half but they have said that they are going to try and put me through as an emergency 鈥� this was about eight months ago, when they said they were going to put me through as an emergency.听 And as far as鈥� yeah, I haven鈥檛 heard anything back.

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White

Well, you may now.听 Eloise, thanks very much.听 We have heard from Wigan Council and we鈥檝e talked to them.听 There鈥檚 a bit of a discrepancy about people鈥檚 idea of the timescales here but they say: 鈥淲igan Council鈥檚 sensory service team immediately contacts any residents who are referred into them for vision rehabilitation to discuss what options are available.听 Unfortunately, we also acknowledge that due to increasing demand for services and limited resources in the local government sector, waiting lists for assessments, which are administered using a priority needs system, can be a number of weeks.听 This is a situation鈥︹�� they say, 鈥溾�� which is not isolated to Wigan Borough, nationally there is a shortage of rehabilitation officers for visual impairment.鈥�

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Just quickly, Eloise, what鈥檚 next for you, what鈥檚 the next step that you want to take?

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McBingham

To try and get the assessment done so I can go out and be able to take my daughter to the park and just feel like I鈥檓 the old person that I used to be and it鈥檒l give me more confidence and hopefully it鈥檒l open the eyes to other people that there is a long waiting list but it is worth waiting for.

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White

Eloise, thanks very much for joining us.

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Someone else who鈥檚 experienced delays in getting the help they need is Bethany Brown.听 Bethany did get some initial assistance, after her original diagnosis, from a ROVI, that鈥檚 a rehabilitation officer, but after her sight deteriorated further that鈥檚 when the delays occurred.

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Brown

I went from being partially sighted to severely sight impaired.听 It meant that I needed to get re-referred.听 I was hoping for support with living independently, so how to use cooker, use microwave, wondering if I needed any stair rails and stuff like that.听 I鈥檓 moving out of my mum鈥檚 house, so at the moment I know where everything is but if I lived independently I wouldn鈥檛 have that.听 The social worker had made a referral in May and I have now got a support worker, or ROVI worker, in March.

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White

So that means you had to wait about 10 months?

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Brown

Yes.听 It was important for me because I wanted the support before I鈥檇 moved out, I wanted to ensure that I had the support and I knew exactly what support needs I鈥檇 need to let private landlords know.听 On top of that, I would want to know that I鈥檓 confident enough to live independently.听 But I understand that there鈥檚 a big demand but I never thought that I鈥檇 be waiting this long.

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White

That鈥檚 Bethany Brown.

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So, what about the rehab workers themselves?听 Well, Simon Labbett is Chair of Rehab Workers Professional Network, which represents this profession and he鈥檚 a rehab officer himself with a local authority.

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Simon, first of all, because there鈥檚 obviously a lot of confusion here, what鈥檚 the correct sequence of events, what are the steps that should happen and the sort of length of time that should be involved?

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Labbett

Okay, well, when initial contact is made by the individual themselves or the Certificate of Vision Impairment is received, they should have an initial contact within two or three days, just to acknowledge that.听 And then it is screened by someone, who should have the relevant knowledge and experience to either ask the person directly what they鈥檇 like to have happen or if they鈥檙e not so sure to coax out the answers.听 So, that鈥檚 the initial screening.听 And then that goes to an initial assessment where you go face-to-face with someone and that should happen within 28 days.听 And that initial assessment is face-to-face so you can pick up on any communication issues or spot any things in the domestic environment that may be difficult for someone.听 And at that point, you would identify the need for rehabilitation or not and then you can then process that and have a rehabilitation programme.

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White

So how surprised are you by the kind of waits that Bethany and Eloise are talking about 鈥� allowing for the fact that there鈥檚 some disagreement between the subjects and the local authorities which, I suspect, is as much due to what Eloise was saying about not knowing who you鈥檙e supposed to talk to?

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Labbett

Yeah, if you don鈥檛 know where to start off, the initial contact point is often staffed by someone outside of the sensory network or without sensory experience, so you鈥檙e talking to someone who鈥檚 very鈥� got very generic experience and it may be very hard to articulate exactly what it is you want.听 If you say 鈥� I would like some vision rehabilitation 鈥� there鈥檚 a fair chance the person in the initial contact point won鈥檛 know what that is anyway.

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White

Really?

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Labbett

Yeah.

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White

Just because they don鈥檛 know about visual impairment very much?

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Labbett

Yeah, well, you can find some鈥�maybe some directors who don鈥檛 know they have a vision rehabilitation service.

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White

That鈥檚 fairly shocking.

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Do you accept the findings of this report?

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Labbett

I accept the findings of the report, I certainly do and I鈥檓 glad they鈥檝e been reiterated.听 And I think reiterated is the word, where do we go next is the point.

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White

Yeah.听 Well, we鈥檙e come on to that.听 Can I ask you, though, is this just about money?听 Wigan referred to lack of qualified rehab officers.

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Labbett

Well, it does come down to money because there are a lack of qualified vision rehabilitation specialists.听 As in lots of social care and health professionals, an ageing population and people retire, so if new ones aren鈥檛 coming through posts aren鈥檛 being filled.听 And we know posts aren鈥檛 being filled.听 So, that accounts for the waiting times.听 There are not enough people there to fill the jobs.听 That鈥檚 a matter of money, that鈥檚 a matter of a local authority investing in that service.

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White

So, what about the alternatives for visually impaired people if their local authority is unable or very slow to help?听 I want to bring in Andy Fisher on this.听 Andy鈥檚 worked in both the public and the private sector.听 Andy, is there a private sector, are there alternatives because we tend to make the assumption that everybody鈥檚 broke but I suppose if you were desperate and you could afford it, is there anywhere else you could go?

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Fisher

There is a private sector but likewise within the private sector there are recruitment issues.

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White

What would you be looking there 鈥� freelance?听 I mean Guide Dogs do offer some rehab but they would agree that that is for people who are specifically using their service, isn鈥檛 it?

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Fisher

As I understand it, that is correct, yeah.听 But I know there are several organisations and I believe Guide Dogs used to do contracting for local authorities as well.听 There are a number of, for example, local societies or in the voluntary sector that work as agents and work on contract to local authorities as well. 听I mean I鈥檝e run a business providing private rehab previously before covid, we provided contract rehab workers, we鈥檝e provided specialist assessment, on spot contracting as well.听 Even working with people with personalised payments or direct payments, as they used to be known as, where people buy in their own services and can buy private rehab, maybe and has been an option before, may be an option going forward as well.

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Labbett

But I think though鈥�

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White

Simon, yes.

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Labbett

鈥� in England the apprenticeship standards, it is basically government money provided to local authorities or their agents to use as they see fit.听 And one of the few success stories in this who saga is vision rehabilitation training being of apprenticeship standard and a number of local authorities and employers like Guide Dogs use apprenticeships.听 So, that is a route.听 The difficulty is getting local authorities to explore that route.

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White

Why are they reluctant to do so?

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Labbett

That鈥檚 not clear.听 I suspect they may be not sure it exists in the first place and this is where we come back to the idea of the voluntary sector, the sight loss sector engaging much more with local government than they have done previously.

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White

Right.听 Now we did ask for the Minister for Social Care to come on to the programme to talk to us about this, the department said they were afraid nobody was available for interview.听 They did send us this statement:

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Department for Social Care statement

Local authorities are responsible for assessing the care needs of individuals with sight loss and commissioning services to support people with rehabilitation.听 The department welcomed the publication of the RNIB鈥檚 Eyecare Support Pathway.听 NHS England contributed to its development and has offered to support its dissemination to eyecare commissioners and providers.

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We also approached the Local Government Association, which represents local authorities, as you might guess, but they didn鈥檛 have anyone available to be interviewed either but their social care spokesperson told us:

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Local Government Association statement

Adult social care services have faced chronic underfunding for many years but councils do their best for communities with the resources they have.听 This report shows the impact of not having adequate funding, staffing or support needed to provide the services people require to live equal lives.听 It is disappointing and concerning that the budget provided no new investment for adult social care.听 Vision rehabilitation services must be fully funded in order to enable people to live full and independent lives.

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So, it鈥檚 going to seem, isn鈥檛 it, to people like Eloise and Bethany, as if everyone is blaming everyone else.听 I want to bring David back in this.听 David, I mean the RNIB is calling for action, could that action or some of that action not come from the RNIB itself?听 I mean the RNIB used to provide rehabilitation, two residential rehab centres, for instance, where people could go for extended rehab courses.听 Haven鈥檛 we reached the point, listening to this frustrating conversation, where the organisation perhaps should provide the help itself rather than telling other people what they ought to do?

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Aldwinkle

It鈥檚 a fair question.听 I think we have to look at a lot of the services that RNIB does provide, you know, including the ECLO and Living Well with Sight Loss which are trying to fill some of the gaps and trying to solve some of these problems.听 We do have to remember that this is a legal obligation on local authorities and I think it would be remiss to simply say charitable funding has to be used to take the government off the hook.听 But that鈥檚 not to say that we shouldn鈥檛 be part of the solution.听 It鈥檚 an old adage that says if you don鈥檛 measure it, people don鈥檛 think it matters.听 And I think the final point I鈥檇 say is that RNIB, as you heard in the Health Ministry鈥檚 statement, has launched the Eye Care Pathway but we need to go further than that and we are looking to work with stakeholders, including Simon and his great team, and local authorities and government and potential funding bodies, to try and find what could be a long-term sustainable solution to this.听 If we don鈥檛 take that approach, I鈥檓 afraid, we will just really be continuing to put sticking plasters on, which is what we鈥檝e done for a number of years, RNIB, Guide Dogs, lots of organisations.

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White

Right.听 Well, let me therefore just go quickly back to Andy and Simon.听 Andy, you鈥檝e worked in this field, you鈥檝e worked in various parts of it, what do you think is the long-term answer to this?

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Fisher

It鈥檚 probably what Simon alluded to earlier 鈥� funding is obviously definitely an issue; we need more training places to feel more specialists through the system as well.听 And also, as well, the thing about registration, about career pathways for professional staff as well is really important.听 And also pay grades as well.听 Again, I know it鈥檚 all money related but it all does connect and we want people to have a career in rehab, it is a wonderful career, it鈥檚 a great job and we want people to work in the career for as long as possible.听 But it鈥檚 a multi-pronged approach really, it鈥檚 not just throw money at it.听 But also including all sectors, I think, we all need to work collaboratively, in partnership and it is involving obviously health professionals more joined up with social care but also, like I鈥檝e been alluding to as well, the private sector does have a role to play鈥�

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Labbett

I鈥檝e got to say I鈥檓 not convinced about this link with health, it鈥檚 not working.听 I think this integrated care board thing is a really good idea but when it comes to eyes, ophthalmology and optometry are very dominant, they鈥檙e not particularly interested in rehabilitation, the funding doesn鈥檛 lie with them, the funding for rehabilitation lies with local government.听 The sector has to speak the language of local government and understand what their pressures are and look at how services are commissioned with local government.听 I just don鈥檛 think the ICB is the way to go at the moment.

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White

Well, there鈥檚 obviously much more to be talked about there and we would be very interested in people鈥檚 reactions.听 Andy Fisher, Simon Labbett, David Aldwinkle, Eloise and Bethany, thank you all very much indeed.

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Before we go, next week we鈥檙e going to be looking at the Disabled Students鈥� Allowance, as there have been some changes to how people will receive financial help towards their specialist equipment, support workers etc.听 We鈥檇 very much like to hear from people who鈥檝e used the service, particularly people who are either applying now or are already at university.听 You can email intouch@bbc.co.uk, you can leave us a voicemail on 0161 8361338 or go to our website bbc.co.uk/intouch.

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From me, Peter White, producer Beth Hemmings and studio manager, Jack Morris, goodbye.