How successful is NHS England’s Transforming Care programme?
An update on NHS England’s overhaul of care for people with learning disabilities
Nick Evans asks whether NHS England's Transforming Care programme is on the right trajectory to meet its March 2019 target?
The clue is in the title. NHS England’s Transforming Care programme was meant to herald a radical overhaul of the way people with learning disabilities and autism are cared for.
The aim was to move hundreds of people out of hospital into the community where there would be greater access to a wide range of support from 24/7 access to intensive care to outreach help and drop-in services.
In six months, the programme should reach a key milestone – the March 2019 deadline for closing between 35% and 50% of inpatient beds. So how is it faring?
Number of people with learning disabilities and autism in hospital in England in July 2018
Source: NHS Digital 2018
According to the latest figures from July, there were 2,380 people with learning disabilities and autism in hospital, a 17% reduction since the March 2015 baseline. Over half of them had been in hospital for more than two years. But that still leaves the system some way short of the trajectory required to hit even the lower end of the target.
Undermined by nursing shortages
RCN professional lead for criminal justice and learning disabilities Ann Norman says the progress made is ‘not something to celebrate’. The whole drive has been undermined by the lack of learning disability nurses – the current vacancy rate is 16%.
‘Learning disability nursing has been hardest hit by the removal of the bursary. The shortages we’re seeing are critical – people are not getting the essential support they need and families are struggling.’
The problems have led the minister responsible for setting up the programme after the Winterbourne View scandal to turn against it.
In a speech in the House of Commons in July, Liberal Democrat MP Norman Lamb criticised the ‘slow progress’ and said the programme was unlikely to meet its targets.
He said he was aware of a review by NHS England that had yet to be published that showed 13 of the 48 Transforming Care Partnerships did not have 24/7 intensive support available to allow people with the most challenging difficulties to live in their own homes.
He also said there were problems providing the care and treatment reviews that people in hospital are meant to have every six months to help make sure everything is being done to help prepare them for discharge.
Extra funds allocated
NHS England acknowledges the programme is proving to be challenging. Over the summer it announced there would be an extra £76 million for community services this year to speed up progress.
That comes on top of the £40 million of extra investment put in since the programme began in 2015.
Money made available this year to fund the Transforming Care programme
Source: NHS England 2018
The bulk of this year’s money – more than two thirds (£53m) – has been transferred from the hospitals' budget because beds have been decommissioned and there are now fewer to pay for, rather than being new funds. But that still leaves more than £23 million of genuinely new investment for the programme.
Innovation and good practice
NHS England national learning disabilities director Ray James says there is ‘much to do’, but he believes there are some examples of innovation and good practice springing up.
‘This extra investment will help to strengthen services in the community to provide the right support and best possible care to enable more people with learning disabilities to live in, or near, their own homes.’
So where is the extra money going to be spent? Much of it will be down to individual clinical commissioning groups and the 48 Transforming Care Partnerships that were set up to drive this scheme.
There is £2 million specifically set aside for children and £10 million for crisis response and other services to help keep people out of hospital.
The areas that have made the slowest progress are also likely to get extra funds on top.
Learning disability nurse and director of PBS4 social enterprise Jonathan Beebee says a big gap is the lack of suitable housing. ‘We work with people who are being discharged from hospital or we help prevent admission, but we’re finding there’s just not the housing available.
‘Commissioners want quick solutions so we’re seeing a real growth in core and cluster models where you have eight or so homes in one setting.
Percentage of people that have spent more than two years in hospital
Source: NHS Digital 2018
‘But I don’t think that’s patient-centred care. It’s just another form of institution.’
He also says he is concerned about what will happen after the March deadline.
As yet there has been no announcement on the future direction. Learning disabilities has been named as one of the 20 key areas or 'work streams' of the ten-year plan being led by NHS England chief executive Simon Stevens for the government. NHS England says nothing will be decided until that plan is produced later this year.
‘There is a bit of doubt and that’s concerning,’ says Mr Beebee. ‘We fear things could drift.’
Outreach support for families
An outreach service has been created in the London Borough of Tower Hamlets for children and their families. The service provides drop-in, individual and group support for people with all types of disabilities.
The emphasis is on coping psychologically and emotionally with the challenges of having a child with disabilities. Parents are given tools and techniques to help their children to eat better, sleep better and manage their emotions. The team normally works with the whole family, including siblings. There are also workshops, organised play sessions and home visits.
More than 100 families receive either group or individual support, while hundreds more take advantage of the drop-in, workshops and play sessions throughout the year.
A ‘crash pad’ to stop hospital admissions
Durham has set up an emergency crisis facility to give people with learning disabilities somewhere to go when they need extra support to help avoid hospital admissions.
The so-called ‘crash pad’ is a self-contained flat with a lounge, kitchen and bathroom, which was set up in early 2017.
It is an annex to a residential care home. This means that staff are on site and can easily help the person living there if they need it.
The bed is designed for when a person’s existing placement breaks down and referrals can be made at short notice.
They are given intensive support from learning disability nurses, the community behavioural team at Tees, Esk and Wear Valleys NHS Foundation Trust and the provider, Swanton Care.
Durham Council commissioning policy and planning officer Fred Grand says: ‘It provides a bridge between living in the community and going to hospital. Typically, a person might have had a dip in their mental health which leads to challenging behaviour.
‘Everyone has either gone back to their previous placement or moved on to somewhere different that was more suitable.
‘People shouldn’t be in hospital if they don’t need to be, and the crisis bed helps us to achieve that.’
Nick Evans is a freelance journalist