Rob Greig: ‘We are going backwards on learning disability – there needs to be a fresh narrative’

Former NDTI chief talks policy, politics and plans for the future, as he prepares to retire from his 36-year-long career in the health and social care sector

Rob Greig_NDTI
Photo by Learning Disability England

Rob Greig says there were many reasons why he decided to retire from his role as chief executive of the National Development Team for Inclusion (NDTI), but one was his “distinct frustration” at the current backwards trajectory around national learning disability policy.

“We are going backwards and we need a new generation of people to stop that – rather than me saying we got it right 20 years ago, so we should be doing what we did 20 years ago,” he says.

It is almost 20 years ago – 2001 to be exact – that Valuing People was launched, a national policy designed to improve the lives of people with learning disabilities and the quality of support services. Two years earlier, Greig had been seconded to the Department of Health (now the Department of Heath and Social Care) to help develop it.

“The most important thing about the Valuing People policy was the way in which it completely shifted learning disability policy away from learning disabled people being ‘poor, disabled people who need services to live a life’, into being people who are equal citizens,” Greig says.

The Valuing People team did this by ensuring that the voice of people with learning disabilities and their families was firmly at the heart of the work. That “took some doing” Greig says, because “it was not acceptable to the government at that point in time to have people with learning disabilities in a Department of Health core group” – instead professionals and experts were called in.

But the team got agreement for a parallel piece of work involving people with learning disabilities to directly inform Valuing People. They also lined up family carers to speak at a ministerial event to launch the policy, who were encouraged to “harangue” the minister about their non-involvement, after which he said families had to be involved, Greig adds.

“We thought we’d changed the dialogue for good, but nowadays it is [still] rare to see people with learning disabilities at the centre of organisational decision-making,” says Greig.

‘Suddenly felt right’

The roots of Greig’s passion for working with people with learning disabilities developed when he moved to a role at the then Greater London Council’s voluntary sector development programme, after a brief stint in public relations encouraging people to buy more mars bars.

“I thought ‘god this isn’t me, I’ve got to do something more useful with my life’,” he says.

The programme involved grant aiding the voluntary sector in London to empower communities and before long Greig became deputy head, with a focus on disability and legal rights. From here, he went to work for what was then known as the Lewisham and Southwark health authority, planning the closure of psychiatric hospitals, and later managing learning disability services there too.

“When I started working in learning disability something suddenly felt right,” he says. “A substantial chunk of my out-of-work activity had been politics, and I suddenly felt in that job I was probably going to achieve more for my political views than I would ever do in pursuing politics.”

Greig spent five years with Lewisham and Southwark, and in the last two was asked to take over managing the local authority learning disability services. This became a precursor for setting up the first joint commissioning arrangement in the country, he says, which still exists to this day.

“After five years of that I decided I needed a break because – and I accept it is a different order to what’s going on nowadays – it was the previous round of major public cuts and I’d just spent five years cutting the budget,” he says. “I felt I couldn’t carry on doing that.”

‘Abiding by the rules’

Greig recognised that the learning disability services in Lewisham and Southwark were among the best in the country (very much down to his predecessor – he adds) and other professionals often wanted to come and see how they worked, so he decided to try out the “consultancy lark” next.

He intended to only do consultancy work for a year or two but it “kind of took off” and when he found himself having to employ other people to do it with him, he decided to take the work over to King’s College London, where it became part of the Institute for Applied Health and Social Policy.

After a brief spell here, Greig got the call asking him to become the expert external advisor for Valuing People. Out of the policy came the role of national director, which Greig says he deliberated over taking, because he “wasn’t keen” on working for government.

“I’ve never been very good at working with formal authority and working in a place where you have to abide by the rules and do things in a particular set way – and from what I had seen in my two days of being seconded into there was that was how government works,” he says.

“But I came to the conclusion that having had a significant role in the development of the policy, I would kick myself if I then just walked away and let someone else do it.”

‘At odds with government’

Greig’s reluctance to work in government came back into play when, after six and a half years as national director for learning disability, he could see Valuing People becoming less of a priority and was finding himself “increasingly at odds” with what was going on in government.

“I had what can be best described as a full and frank discussion with my superior, who argued that the policy had had a number of years as a priority, and other areas needed to have public priority.

Whereas I take the view that when you are dealing with centuries of prejudice, you don’t deal with it in eight years.

Greig says this was all part of a departmental belief system that power and decision-making should be delegated to local people to do what they want, adding that over the last 20 years, government has gradually removed its powers and levers to get local people to make changes in line with policy.

Although Valuing People is still officially government policy, Greig adds, the delivery programme was stopped and ministers stopped talking about it. The National Forum of People with Learning Disabilities – a “great success story” to come out of the policy – was also closed when the coalition government came into power in 2010.

“People are excluded from society for a reason – and the reason is that society decided to exclude them,” Greig says. “If you take your foot off the gas and stop applying pressure on people to change the way in which society behaves, it will go backwards – and that is what has happened.”

‘Sentimental attachment’

Greig decided to step down and accepted a job offer with the NDTI – an organisation he had links with during his time in consultancy.

“In the 1980s the NDT – as it was back then – was the organisation that made things happen around learning disability, so I kind of had a sentimental attachment to it I guess,” he says.

Greig took the job on three conditions – that it had to become broader in terms of its coverage and focus on all groups “at risk of marginalisation that social care in its wider context tends to get involved in”;  it needed to become re-involved in research, evaluation and policy development, and, the headquarters had to move to Bath (where Greig lived) because having spent six years “charging around the country”, he wanted to be able to come into the office easily.

These terms were agreed and six months later Greig took up the post. But it wasn’t quite as he expected to start with – he arrived to find the organisation in significant financial difficulty.

“We managed to turn it around,” he says. “We rebranded, adding the ‘I” for inclusion, and joined with the older people’s programme, bringing research and evaluation expertise back in.”

‘More influential organisation’

Today, the organisation looks quite different with 25 members of staff, a network of 50 associates, and a considerably higher turnover. Most importantly for Greig, it is “a lot more influential than it was at that point of time and works across a much broader canvas”, with work programmes around older people, mental health, learning disability, and children and young people.

Greig is particularly proud of the work the team has done around special educational needs and preparing young people with disabilities for adulthood.

“The Preparing for Adulthood programme has really started to place things like genuine person-centred practice, people getting a job and making relationships on the agenda,” he says.

“It’s stopped just being about [a path of] first special school, then residential college, and then go to a day centre – it’s a really good piece of work and I am very proud of that.”

Looking back on his 36-year-long career in the sector, Greig says the highlight, and the thing he has enjoyed most, has been bringing a team of people together to make a difference.

“The Valuing People support team were a just quite brilliant team of people and then at NDTI, I had a great team of people who are value-driven [and] committed – my major challenge has been stopping them from working 50-hour weeks because they believe so much in what they are doing.”

‘A new beginning’

When asked for his departing thoughts on what’s next for learning disability work nationally, Greig says the country needs a refreshed policy and national programme of support, but there will be “limited success when you are working in the context of a social care system in crisis, which it is”.

“I can say what I think should happen with learning disabilities, but unless there is a major reinvestment in social care, it will be difficult to do anything,” he says. “I would also emphasise that you don’t just put money in and let social care carry on as it is – it has to do things differently.”

What’s next for Greig himself? He has no idea – and that’s exactly the way he wants it for now.

“It hurts hitting your head against a brick wall after a while…and I would just like to try doing something different in life – I’ve consciously decided to say no to everything that I am asked to do that is vaguely related to what used to be ‘work’ for the next six months and then see what happens.

“It might be that I absolutely miss the disability cause and there may be things I can do to contribute to that agenda in a non-working capacity – but I’m very clear I’m not going to be someone who reappears doing the same sort of things they used to do but in a different guise.”

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11 Responses to Rob Greig: ‘We are going backwards on learning disability – there needs to be a fresh narrative’

  1. Carol Anne Duane October 25, 2018 at 3:17 pm #

    As much as Rob Greig thinks he will not be involved I hope he will. I too have had over thirty years working in the Learning Disability field and followed lots of Rob’s work over the years.
    I took early retirement due to many of the issues he has raised , yes we did get it right twenty years ago , we were actually way ahead in our practice regarding people’s rights . Sadly the system is now in crisis and there doesn’t seem to be anyone taking up the stance to carry on developing the way we support people with learning disabilities. Health needs are going backwards , named worker role goes unsupported and serious case reviews regarding people with LD dying early due to lack of care are increasing and no one is listening. Reading this article made me sad but in a way gave me some relief that it was not just me banging my head against the wall , many years ago I remember Rob saying talk the talk and walk the walk , sadly many Practioners are walking away.

  2. Julia Brown October 25, 2018 at 6:22 pm #

    Feel very fortunate that we had the privilege of Rob Leading our 2018 Social Care Top Leaders Programme – we are all passionate at talk the talk and walk the walk – still meeting as a proactive national action learning group. Aiming to continue to strive to always keep individuals we support at the heart of everything.

  3. Julie Pointer October 26, 2018 at 8:27 am #

    Well written as always Rob. We need to start with inclusion of all children in what is sadly becoming a bit of a fractured society. I certainly welcome the plan for Ofsted to shift the curriculum to include a more rounded approach to education to include the arts as well, but this is about values, equality and difference and the more integrated our schools are the more understanding of difference the next generation will be.
    Professionals need to stop being precious about their roles and stop assessing families to death. Have a shared vision about where you want to get to and an equal conversation about how to get there.

    • Lyn October 26, 2018 at 12:13 pm #

      I absolutely agree

  4. Lyn October 26, 2018 at 12:26 pm #

    I appreciate you have retired but the cic portsmouth needs a big shake up the company mindset is stuck in the past

  5. Maxine Bell October 26, 2018 at 12:38 pm #

    How amazing to hear someone speak like this. I have a son of 23 with Down’s syndrome and I am one of those pain -i-n butt parents who stay informed, speak up for their son and those of his peers to be treated as equal human beings. I also work in a sector as a specialist in Learning Disabilities.
    The care act came in to personalise care and support, but as you say, into a system in crisis. I do understand that. I have worked in the NHS, education and the charitable side of social care.
    However, attitudes have nothing to do with budgets and I do still keep hitting walls on behalf of my son, in ASC and other services. I still feel many do not see people with LD as valuable. For instance, many financial assessments are extremely basic. In residential a statutory amount is allowed of about £24, with no questions on what activities or interests they have, no questions on what they might need to buy themselves or if it is enough for clothes etc. The decision is generic and therefore a long way from personalisation. This continues in supported living arrangements too. Please also, if an adult with LD is living at home please stop thinking of them as children just because they live at home with their parents.
    The sad thing is this is one group of people who need society’s support. Their needs are created through no fault of their own. Yet their are many of us who contribute to our own lack of wellbeing and receive better services and treatment. The government and other agencies are short sighted, heads buried in the sand and people with LD do and will need support, but they are also entitled to a meaningful life with love, friends, aspirations, employment and activities they enjoy. I get exhausted from the “fight” as well, so I do understand Rob’s need to stop “hitting his head against brick walls,” but I was so glad to hear of all the things he has done so far and I hope that our voices can be heard louder and clearer and give more space for adults with LD to be heard too. I hope that someone will pick up the banner for this great cause for these wonderful group of people.

  6. Mel Axon October 26, 2018 at 3:27 pm #

    I also have been working I have been learning disabities for 36 years and my thoughts reflect your too Rob. Frustrated that I am sometimes to be hearing ideas that we had…. Yes 20 years ago. Good luck for your future and thanks for the work you have achieved.

  7. Charles Henley October 29, 2018 at 7:49 pm #

    Much as I sympathise with the despairing part of Rob’s narrative I think his mistake was building his philosophies and objectives on the ‘bad old days of 20 years ago.’
    Like so many other ‘new generation pioneers’ who came into this area of social work in the 1990s, Rob missed the evolutionary progressive part from which there was much to learn. 1970 -1985.
    Instead, he picked up the chaos cause by the King’s Fund Centre’s fanatics who decreed in 1984, that as everybody, regardless of profoundness and complexity of disability, was capable of getting a paid job, all Day Centres and special care units could be closed. Structured and specialist support wasn’t necessary because ‘the community’ was where they belonged and ‘the community’ could meet all their needs. Unbelievable this may seem , but it was followed by a mantra that has been taken over and led us to Winterbourne View and where cars in the community is now. Charles Henley

    • Rob Greig October 30, 2018 at 8:22 am #

      After around 20 years of doing it to justify your negative and outdated agenda Charles, don’t you think it is about time that you stopped misrepresenting and intentionally misunderstanding what I and others have said and done?

      • Amanda reynolds November 1, 2018 at 7:47 am #

        Too many years ago now I was leading the closure of a long stay hospital in Norfolk and I read the valuing people policy just after it was published . I had no idea how in Norfolk where Institutional care seeemd to be the norm we would do it BUT I knew instinctively valuing people was what we needed to deliver. I somehow got robs number at DH and I still remember your advice and support to me . We closed that hospital and moved more than 100 people into their own homes . Robs team continued to support me – mentoring me though many challenges .

        I think we are in crisis now about the funding cuts BUT it’s not just the money our greatest crisis is the cuts have given us a poverty of ambition and we have lost the relentless drive to support people to have the lives we take for granted as our right in 2018

        Thankyou rob for “valuing people” and thankyou is never enough for your drive, your leadership and your skill in keeping learning disability high on the agenda for so long

        Take a well deserved break, flame that fire and look forward to what’s next for you


  8. Martin November 2, 2018 at 12:11 am #

    I share Rob’s despair and feel equally demoralised. I remember managing services in the early 2000’s in which clinicians where trained as PCP facilitators, where people where placed at the heart of service planning irrespective of the challenges they presented. I remember managing services which I couldn’t say where they would be in 5/10 years time because they would be shaped by the people we supported. I still grieve for those times before the cuts we suffered because I felt we made a difference, and that’s why I became a nurse. But I remember a time when we offered true supported living to the most complex of people and watched them flourish once we had gone through a period of decompression after years of institutionalisation. I watched some go on to have intimate relationships, the thing we take for granted, I remember some of our so called high risk individuals who previously lived in specialist inpatient units by themselves living in ordinary houses, supported by ordinary people being embraced by their local communities and I mourn for those times. It’s takes special people, such as Rob, to have the faith and determination to make that dream a reality for some of our most challenging people. Like Rob I don’t see any inspirational leadership / policies/ initiatives which will help build on what has previously been achieved. For me the defining era in learning disabilities was the early 2000’s, a bit like my musical tastes really, but I won’t look back with the same sense of nostalgia. I wish you all the best for the future Rob