Challenges facing the Transforming Care Programme for people with learning disabilities

The rationale for the Transforming Care Programme to facilitate appropriate health and care services, so that more people can live in the community, with the right support, closer to home is welcome. However, finding appropriate accommodation for people with a learning disability and/or autism who display behaviour that challenges has proven to be complex and more expensive than anticipated.

Recognising the challenges associated with the programme is clearly a vital step in addressing the issues and commencing a proper dialogue to push towards successful implementation by March 2019.

The platform of the programme is to take a collaborative and joined up approach to enable the transition from institutionalised settings to local and more community based services. We believe working with the independent care sector, both private and charitable providers, is key to planning ahead to find the housing, staff and specialist support necessary that delivers better lives for people and their families.

Involving providers

Unfortunately, too many providers still feel commissioners do not engage with them soon enough, or at all, and thus opportunities are being missed to achieve the targets for reduction of people in hospital.

Involving providers in early planning is essential as it will support realistic funding and performance expectations and ensure local sign off and accountability. This should assist with budgeting at an early stage and ensure providers are ready to meet new service demands.

The majority of LD provision is in the private sector – have private providers been involved in that crucial early planning stage? Too many of our members say no – they have not – and the understanding and expectations of the Transforming Care policy are not always equally clear to all.

The majority of learning disability provision is in the private sector – have private providers been involved in that crucial early planning stage?

We need to be fair to all providers and involve and seek their views and opinions. The experience of actual delivery is vital in planning ahead for the continuation of the programme to engender confidence and understanding between all of those involved.

This is also about bringing providers together to work more collaboratively to appraise need and work on solutions and delivery plans for cohorts of people in an area. We have, for example, begun to explore whether we can develop a typology of needs recognised by commissioners and providers that would allow planning for workforce and funding to meet those needs in a given geography.

These sorts of initiatives across providers of all types and commissioners could help get groups of people out of ATUs more speedily and safely.

Role of CQC

There are, of course, other factors that are impeding discharges from ATUs of which we are all aware, clinical support in the community for example, but less understood is the role of the Care Quality Commission in this space. The CQC has a role in registering both variations to existing provision as well as new care settings.

The current CQC guidance Registering the Right Support does not always recognise the needs of high acuity individuals, where providers need to invest and plan carefully to provide settings that allow for proper staff numbers and training and where the type, quality and size of provision must reflect the extra cost and the need for viability.

The CQC focus on certain types and size of provision (eg six beds maximum for residential care) does not always fit for this particular group of individuals or take account of provider knowledge and experience on what works. Neither does it take account of individuals’ preferences to join a particular service if that means it will not fit with the CQC’s promoted models.

The current CQC guidance Registering the Right Support does not always recognise the needs of high acuity individuals

The CQC based its RRS guidance on National Institute for Health and Care Excellence guidance and we await a review from CQC now that new NICE guidance emphasises the need to focus on the culture of a service – small scale domestic feel with no mention of number of beds. 

The result of RRS to date has been that providers have had to halt plans for new services, which feed directly into the lack of capacity to meet ATU targets on moving people out into community settings. Indeed, the CQC can take a stance on registration that is completely opposite to that of local commissioners and providers who find themselves caught between a rock and a hard place. This does not reflect person centred care and we are left wondering where is the individual’s wish in all of this?

In order to ensure people with the most complex needs are not let down and do get the chance to move into local communities, we must ensure providers, the regulator and commissioners work together and with the people needing the care, to find quality and sustainable provision going forward.