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Five things the third sector can do for you

Barbara Smith of Neurological Commissioning Support explains what a voluntary sector consultancy can bring to commissioning.

Neurological Commissioning Support (NCS) was formed by the Multiple Sclerosis Society, the Parkinson's Disease Society and the Motor Neurone Disease Association to support PCTs with commissioning. We help analyse needs, services and funding, getting patients and carers engaged and redesign services.

Each charity invested £150,000 as set-up costs and contributes £50,000 a year in running costs.

We are commissioned by PCTs to help in the commissioning cycle, with PCT contributions ranging from £30,000 to £70,000 depending on the range of support required.

We are working with PCTs in four areas – Bath & North East Somerset, Cumbria, Gloucestershire and London (Wandsworth) and are keen to encourage others to look at long-term neurological conditions. In Wandsworth, my role as programme manager is jointly funded by the PCT and the charities.

These are the services NCS can offer.

1 Create true patient involvement

NCS has used a variety of methods to get patients and carers on board. In Gloucestershire, my colleagues went on local radio to appeal for people to come forward to give their opinions on services. They set up a Facebook group and used email and blogs to engage with service users, as well as focus groups and one-to-one interviews. They had more than 1,200 comments on the Facebook pages alone.

In Wandsworth we started with a stakeholder event, held last May. Using the contact lists of the local branches of the three NCS charities, we were able to invite service users and carers to the event and had 50 people attend. As well as identifying key priorities, the meeting recruited a group of volunteers who now sit on our service user and carer reference group (see below).

From this and other related activities, we learned the following.

• GPs might have only one or two patients with a particular neurological condition. For example, in the whole of Wandsworth there were only 20 patients with MND.

• Service users were frustrated with the fragmentation of information and wanted a single portal to contact when they needed day-to-day advice.

• Users wanted better access to psychological support.

• Patients who had access to specialist nurses could not speak highly enough of them. This is how we are addressing these points.

• Getting specialist nurses to work with local practices and PBC clusters to ensure patients have the information they need.

• Developing simple medicine information leaflets for GPs to give to patients.

• Making Careline, the existing local council telephone and online information service, the single portal for advice about benefits, home care or other day-to-day aspects of managing the disease. We then publicised this resource to both patients and clinicians.

• Having a business case approved for a psychologist to be part of the neurological community rehabilitation team.

• Carrying out a review of specialist nurses. These nurses have huge caseloads, so we need to ensure they have the capacity to manage patients and guide them through the system. There is only one nurse for MS, one for epilepsy and one for Parkinson's disease, all based at St George's Hospital in south-west London. Our MND specialist nurse is based at King's College Hospital in south-east London and covers a larger patch beyond our boundaries. The review will take place in spring, and will consider whether we need to create a new post, with a specialist nurse based in the community rather than at a hospital.

• Finally, we are also providing training to ensure patients are equal partners when they sit on steering groups. The PCT offers general support for people to participate in steering groups and we are providing our own module specifically for patients with long-term neurological conditions and their carers. It's important that people don't sit in meetings baffled by the jargon and afraid to speak up.

2 Make things happen

It's important that patients and clinicians feel that when they put in time and effort they will create real change.

It's also important that change is driven by clinicians and service users and we need to have mechanisms to achieve this.

In Wandsworth we have three elements to our governance structure – an overall steering group, a service user and reference group and a clinical network.

The overall steering group is charged with developing and implementing a commissioning strategy for services.

It includes commissioners from the PCT and PBC groups and adult social services; service users and carers; lead clinicians including consultants, specialist nurses, GPs, therapists and social workers; and voluntary sector representatives for MS, Parkinson's disease and MND. It meets six times a year.

The service user and carer reference group is a forum to identify areas for improvement, find ways to bring this about and vet proposed developments. We have service users at different stages of their condition and across the age range.

Our clinical network includes health professionals from primary care, acute trusts, mental health and community services and others. They also identify areas for improvement, create care pathways and come up with proposals for workforce development and new ways of working.

In Wandsworth, a second stakeholder event in January checked whether we had identified the right areas for change and finalised our action plan. The revised action plan has been prioritised by the steering group and the clinical network has agreed who will work on specific projects.

Our next step is to recruit patients and carers to work on specific projects with the clinicians.

3 Assess patient need

Part of our commission in Wandsworth was to audit how the PCT was doing against the National Service Framework for neurology. Funded by the Department of Health, the NCS had developed a quality neurology audit tool – a computer-administered questionnaire that drills down to identify any gaps in patient pathways.

In Wandsworth, the clinical reference group – some 20 clinicians – spent more than four hours working through the questionnaire. The same exercise was then done by two patient focus groups.

The package covers everything from screening and early intervention through to palliative care and carers' needs.

We are also grappling with hospital episode statistics to try to find out what happens to patients and where money is spent. This is not obvious for long-term neurological conditions as patients may be admitted for other reasons, such as a respiratory problem. We have to go down five levels of diagnostic information to do this. We are also looking for specific drugs to identify the patients who are using them.

NCS also has access to charities' databases of people with long-term conditions. We need to track down those who are less visible to the NHS and social care, the younger patients who are not yet heavy or regular users of hospital care. If we can get hold of them early we can keep them well for longer and maximise their ability to take care of themselves.

Obtaining hard data is still a work in progress but because of the audit tool I am confident we are addressing patients' needs.

4 Reach across organisational boundaries

Part of our remit is to bring together all the organisations and professionals involved in caring for patients with long-term neurological conditions. We need to look at this from the patient's point of view, instead of saying ‘this is the PCT's job, this is the acute trust's or the council's job'. The third sector has a key role here. We sit outside the NHS and local authority, so our perspective is broader. We are also seen as a fair broker – we don't have a vested interest in promoting one agenda or institution.

In Wandsworth, we are linking long-term neurological services with end-of-life care and the council's commissioning process for a new home care service.

For example, Trinity Hospice has been developing services for people with MND. Patients with neurological conditions have worked on its specification to make sure it will improve on the quality and flexibility of home care. The local authority and PCT agreed a joint strategy for carers six months ago and some of the issues that were raised about recognition, respect and information are relevant to this patient group. Other strategies link to support for work, leisure, transport and adaptations to housing.

Many patients with neurological conditions require help in the home and the action plan highlighted that patients wanted more choice and flexibility. We have worked with the local council to develop personal care budgets so people can have more choice over what help they buy in to suit their personal needs. The flexibility and quality of carers varies a lot in Wandsworth, so personalisation is a way for people to feel they have choice and control over their care.

Our approach is challenging the spectrum of care from initial testing to end-of-life care.

While PBC is to be applauded for having a strong local connection with patients, it is clear that some neurological conditions are rare and it is not feasible for PBC groups to commission, for instance, their own specialist nurse. Our model provides an opportunity for PBC to have a significant voice in the bigger commissioning plan.

5 Help make difficult decisions

Of course, in the current financial climate, any improvements we make have to be self-funding. So we have to look at what we are spending on inpatient, outpatient and community care and how we could make better use of that money. For instance, in some parts of the country NCS has identified that patients are being admitted to hospital for intravenous steroids or apomorphine administration when it can be given in the patient's own home.

In Wandsworth, when we have finished costing the activities in the current system we anticipate being able to show the commissioning of inpatient and outpatient treatment in acute hospitals can be reduced if greater support is available for people in terms of what patients and carers have told us is important to them; such as quality and flexibility of home care, access to specialist nurses and respite care. By approaching commissioning in this way and getting service users involved,we can get a sense of what to prioritise when PCTs are having to make tough decisions.

Some PCTs are already discussing whether this model for neurological conditions could be applied to other long-term conditions.

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