Quality Requirement 1: A person-centred service

People with LTNCs are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Joint commissioning arrangements in place


Service systems that provide integrated care


Care planning and co-ordination routinely experienced


Information about treatment and support to self- manage


In contact with a health professional



Indicators of progress

In Bernard et al’s national survey of PCTs (2010) 44% of respondents reported that they had completed Joint Strategic Needs Assessments (JSNA) that included a reference to LTNCs in general, with 10% referring to one or more LTNC specifically (2% of PCTs answered ‘yes’ to both).

Bernard et al (2010) report that almost three quarters of PCTs responding to the survey had joint commissioning arrangements for LTNCs in place:

  • 12% of PCTs reported commissioning arrangements for LTNCs via a single health and social care organisation, or joint or integrated commissioning team accountable to both bodies and using pooled budgets;

  • 62% had less formal arrangements where individual stakeholders remained accountable to their own organisation, but some joint commissioning arrangements existed, including aligned budgets.

Bernard et al (2010) found that 66% of PCTs had arrangements in place to implement the NSF for LTNCs, e.g. across-sector, strategic group with responsibility for service improvement for LTNCs, with just over two-thirds of these groups (68%) involving service users and/or carers. Most groups appeared to be active, 88% having met in the previous three months before the survey.

Bernard et al (2010), Abbott and Carpenter (2009), Jackson (2011a and 2011b) all present evidence of health and social care systems that provide integrated care and identify particular models of care that could successfully provide a person-centred
 service and were highly valued by service users, such as:

  • Nurse specialists and/or key workers

  • Community Interdisciplinary Neurological Rehabilitation Teams (CINRTs)

  • Day services

However, provision was patchy across the country and varied according to LTNC:

  • 73% of PCTs in Bernard et al’s survey (2010) reported having one or more CINRT, with 47% of them covering all LTNCs

  • 93% of PCTs in Bernard et al’s survey reported provision of nurse specialists in their area, but only 20% covered all LTNCs

  • Newcastle Muscle Centre cited as the only service offering fully integrated multi-disciplinary service and continuity of care for people with DMD (Abbott and Carpenter, 2009).

Fitzpatrick et al (2010) found that most patients (95%) were in contact with a health professional, and few reported problems with being able to consult when necessary. 94% felt that they were given enough information about how and when to take their medication.

In Jackson’s study (2011a) almost all of the people in the sample (95%) had been in contact with a health professional about their neurological condition in the year before the survey & felt informed about medication (94%).

Inhibitors of progress

Evidence from Bernard et al’s survey (2010) reveals 47% of PCTs systematically recorded numbers of people with LTNCs and, of that group, only a third recorded all LTNCs. Epilepsy was the single most likely condition to be recorded (28%).

Bernard et al (2010) found that 89% of PCT Commissioners did not know how many people with LTNCs had care plans, as set out in DH guidance. Fitzpatrick et al (2010) found only 22% of his sample had a care plan, though the majority of them (75%) felt it was being kept up to date.

Fitzpatrick et al (2010), Jackson (2011a) and Abbott and Carpenter (2009) all found that experiences were mixed regarding co-ordination of care, with only around a third of participants reporting they had a professional care co-ordinator.

Abbott and Carpenter (2009), Bernard et al (2010) and Hoppitt et al (2011) highlight the extent of need for appropriate and timely information, particularly for people with rarer neurological conditions and at transition between children and adults services. Dawes (2020) also identified lack of information about safe, effective exercise and concerns that both fitness and health practitioners lacked specific knowledge about their neurological condition.

Fitzpatrick et al (2010) report that only 27% of survey respondents felt they had been given enough support by health and social care professional to develop self-management strategies.
In Jackson’s 2011b study, nine in every ten of the 142 adults with LTNCs were rated by their carers as having complex needs. However, only a third had a case manager or equivalent person who was responsible for the planning and co-ordination of their health and/or social services. A similar number had participated in a review meeting to address co-ordination of services during the past year. The remaining two thirds do not appear to have received integrated assessment and planning of their health and social care needs.

Three quarters (209/284, 74%) of the carers in Jackson’s study (2011a) expressed a need for more advice, information and help about the neurological condition of their cared-for person.

Jackson (2011a) also reported carers’ uncertainty about who had a ‘care co-ordinating’ role and that social services seemed to be “fragmented and inefficient” (p93). Over three quarters of the sample of 282 carers in this study needed help with planning treatment and care for the adults they cared for, either currently or in anticipation of future events.

Although sample sizes are relatively small in the RESULT study (Hoppitt et al, 2011), and the data describe patients’ reports/ perceptions of the care they received, the levels of information offered do not appear to meet the recommendations set out in the NSF.


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