Do service users have a place in Links?

After a shaky start, local involvement networks are now doing what they set out to do: involving clients in service commissioning, delivery and scrutiny.

Attempts to involve service users in the delivery of health and social care have had a long and not particularly glorious history in the UK – especially for social care.

Over the past 40 years there have been attempts to give patients a voice in the NHS through community health councils and later an expansive raft of organisations, including the Patient and Public Involvement (PPI) forums designed to provide public input into the delivery of NHS services (see below).

But it was only with the introduction of local involvement networks (LINks) that social care users have had the opportunity to participate, at least in theory.

Piloted in 2007, LINks are intended to involve local communities in the commissioning, provision and scrutiny of local care services in health and social care. For the first time, social care users would, through their authorised LINk representative, have the right to enter and observe the premises of service providers.

This was a marked dilution of the old PPI forums’ power to “enter and inspect” NHS premises. That was the intention but early experiences were not good.

Early Adopter programme

In November 2007 the nine pilot sites in the Early Adopter programme reported several concerns about the new bodies. These included insufficient funding, mistrust over the role of local authorities and difficulties working with specialist trusts and national NHS organisations.

In 2008 the deadline for rolling out the programme nationally was extended when it became clear that several local authorities were irreparably behind schedule.

Then in October 2008 the National Association of LINks Members (Nalm) published a report in which it claimed the government had reneged on its promise that the monitoring of hospitals, clinics and care services would continue after the abolition of PPI forums. Activities during the transitional period had been bureaucratic, not patient-centred and left service users with no independent voice.

Moreover, Nalm found that some local authorities were retaining large fees from tiny LINks budgets to cover their own costs. Haringey took £64,900 from a three-year budget of £514,000; Sefton £52,934 out of £513,000 and North Yorks £68,000 from a budget of £660,000.

One year later there are signs that some LINks are emerging from the transitional bureaucracy and starting to make an impact on the delivery of care. However, the picture is patchy and much of the good work focuses on the delivery of health rather than social care. In many areas frontline social care professionals are starting to express their frustration at the slow rate of progress.

“When LINks were announced there was a lot of excitement at the prospect of being able to observe service providers’ premises,” says one community worker from London.

“But ours seems to have spent the whole of the first year working out its terms of reference. A lot of people have got frustrated and drifted away so we are left with the same old people talking about what they want to do but nothing is getting done.”

Mapping exercises

A common criticism is the inordinate time LINks have spent on mapping exercises, surveys and setting up their own internal structures.

But this is inevitable, says Alyson Morley, senior policy analyst at the Local Government Association. “If you have to set up your own governance and make sure you are representative of and reflecting the needs of your local community then it’s complicated and takes a lot of time,” she says. “In the long term, LINks are a step forward from PPI, but they will inevitably be quite slow to make their presence felt.”

Morley emphasises that LINks are more in tune than their predecessors with the modern delivery of care. “It was clear that the model of PPI forums based on a single [healthcare] institution was not sustainable in an era when we are moving towards a more person-centred service,” she says.

“So it was incredibly welcome that LINks would cover both health and social services, the whole of the local authority, the PCT and the commissioning of private services.”

However, Morley acknowledges that the LINks have got a long way to go if they are to achieve their potential. “It’s true to say that the transition from CHC to PPI to LINks has not been a happy one,” she says.

“There’s no doubt that the way LINks are operating varies from one part of the county to another. To an extent this was inevitable in that LINks are more laissez-faire organisations than the PPI forums.

“I know that a number of ex-PPI people felt badly done by in the change to LINks. You have to remember these are often busy people who work tremendously hard and, in the case of the visit and view teams, have a huge responsibility on their shoulders. You need to keep these people on board.”

Bias towards health

The tendency for LINks to be dominated by people previously involved in PPI forums is often felt to result in a bias towards health rather that social care.

However, there is at least one social care professional who has found her LINk “very receptive” to social care concerns.

Tara Kellie, a development worker at the Lincolnshire Individual Budgets Network, has been using the lines of communication within her LINk to drive a project to help people improve the control they have over any support they receive.

“We have started to run courses on support brokerage that are attended by workers from charities such as Age Concern, non-profit organisations and individuals with disabilities and their carers,” she says.

Elsewhere, LINks continue to struggle in their interactions with social care organisations. It is a problem acknowledged by Nalm chair Malcolm Alexander who is a member of the steering group of the Hackney LINk in London.

“In many ways social care is more complex and not as clear-cut as health,” he says. “Visiting a ward in a hospital is straightforward. But in a care home, say, you are only allowed into the common areas, so you don’t know what’s going on in the living areas.”

Nevertheless, Alexander emphasises that LINks members are keen to play an active role in the consultation process over the recent adult care green paper.

“There’s a lot of feeling about ensuring that there’s as much access to social services as possible,” he says.

Alexander views the future of LINks with some trepidation. It would be disastrous if a change of government resulted in further upheaval of the system, he says.

“It’s already been an unfairly steep learning curve,” he says. “The last thing we need is another massive change.”

But with LINks now set up throughout the country, the learning curve should be levelling out. The challenge is to turn the talk into action.

Time line: the long path to service user involvement

1960s

Community health councils. These protected patient rights in the NHS but had no involvement in social services.

2004

Patient and Public Involvement forums. Among the organisations that replaced CHCs, these were intended to provide public input into NHS delivery but not into social care. PPIs had power to “enter and inspect” NHS premises.

2007

Local Involvement Networks (LINks) replace PPIs. Designed to involve local communities in the commissioning, provision and scrutiny of local care services in both health and social care. Authorised LINk representatives have right to enter and observe the premises of service providers.

2008

Delays to national roll-out of LINks. October: Concerns over concentration on bureaucratic systems rather than service user involvement.

2009

More LINks established and involving the community.

This article is published in the 8 October issue of Community Care magazine under the heading LINks begin to make connections