Improving outcomes for people with LTNCs

What the research tells us about improving outcomes

The continuity framework

The NSF for LTNCs proposed better integrated services to ensure that people with these conditions experience services that are ‘joined up’. The research however suggests that the broader concept of ‘continuity’ may be more helpful in understanding and meeting the broad outcomes required by people with LTNCs and their families. The concept of continuity was developed by Bernard et al (2010) from an earlier model by Freeman (2007) and is used here as a framework in which to discuss the main findings from the research studies and their implications for policy and practice.

Freeman (2007) identified the key dimensions of continuity as: relationship continuity, management continuity and information continuity. Bernard et al (2010) add a new dimension of continuity of personal agency and social context to these. The introduction of this last element brings the important aspects of autonomy and social equality to the model. These dimensions are not mutually exclusive, but thread through and inter-connect the wide range of responses that people with LTNCs will require over the course of their lives. We examine each in turn below before considering how they contribute to improving outcomes for people with LTNCs.

Relationship continuity

Where flexibility, and the responsiveness that often accompanied it, were found they helped support people’s independence, [and] maintain ‘normality’ in their current lives and reassured them that future needs could be met.
Bernard et al, 2010, p89

Relationship continuity comprises interdependent elements of long-term, longitudinal and relational (or therapeutic) continuity. Bernard et al discuss how the need for regular reviews, having easy ‘ad hoc’ access to knowledgeable support when necessary and healthcare professionals who can ‘stand back’ at appropriate times requires a delicate balancing act. They describe long-term continuity as the provision of uninterrupted care and found that people felt more able to cope when they were regularly followed up by specialists who knew them. Most people in their study did not feel well supported with the kind of intervention, typical of social work and physiotherapy input, that is provided on an episode-by-episode basis. They concluded that long-term continuity was more likely to happen when people had ready access to specialist nurses, CINRTs, responsive GPs, day care opportunities, supportive relatives and active local voluntary organisations.

The longitudinal element is described as keeping the number of health professionals involved in an individual’s care to the minimum, perhaps with a key-worker acting as a link person. Bernard et al suggest that longitudinal continuity is more likely to be achieved over time when there is effective multi-disciplinary team working and there are good information and communication systems in place.

Positive therapeutic relationships were described in a variety of situations, but a common theme was the value people placed on the personal rapport and interest in them as a ‘whole’ person.
Bernard et al 2010, p81

The value of relationship continuity is highlighted in many other LTNC RI research studies (Cook and Atkin, 2011; Jackson et al, 2011a; Abbott and Carpenter, 2009).

The importance of effective communication is particularly emphasised in Cook and Atkin’s study. Their in-depth analysis of the nature of communication between professionals and service users indicates the circumstances in which both are enabled to develop productive and therapeutic relationships. They suggest that effective communication is essential to inclusive practice, but is usually perceived as an adjunct to treatment rather than an integral part of it. They argue that there are organisational and professional barriers to prioritising good communication as part of the therapeutic experience, such as organisational pressures to get people ‘through’ the system and professionals’ perceptions that talking and listening are not as valid as doing things with, and for, patients. They assert that working in an inclusive way requires a mechanism they call a ‘communicative space’, which gives validity to spending time to build relationships and which is “shaped by trust and confidence, mutual respect, open and honest conversations, where differing perceptions are brought together and critical reflection takes place with the intention of forging action” (Cook and Atkin, 2011, p122).

Jackson’s (2011a) study shows that when carers feel they are being listened to they feel better supported, which has a positive effect on their mental health and their ability to sustain their caring roles. The importance of ready access to a named person, key worker, or ‘someone in the care system’, who knows and understands their situation, is often crucial, particularly at times of crisis.

Abbott and Carpenter (2009) highlight the need for relationship continuity during transition from children’s to adults’ services. They argue that when people with LTNCs (not just young men with DMD) are dealing with change and uncertainty they need consistency and to feel confident that support will be flexible and appropriate.

Management continuity

People with LTNCs require a range of specialist services at different points in their lives and stages of their health condition. They are not a homogenous group and this was recognised in the NSF which used the following typology to accommodate people’s requirements:

Similarly, the whole of a person’s life is affected by their health condition, and individuals with a LTNC require those they rely on for support to have appropriate knowledge, insight and expertise; whether it is to help them stay in employment, develop personal skills, enjoy a social life or assist with personal care tasks. Carers also need to feel confident in the quality of replacement and respite care services available to them and they require knowledgeable, well-trained care staff. These attributes have been recognised in recent health and social care policy documents; Equity and Excellence; liberating the NHS (2010) and The Vision for Adult Social Care Services (2010), which call for ‘joined-up’, high quality care. (see: Appendix Three for a digest of relevant current policies).

Abbott and Carpenter (2009) found that young men, and their families, appreciated the continuity of care they had received during the transition between children and adult care afforded by specialist centres, such as the Muscle Centre in Newcastle, or the neuro-muscular service in the West Midlands (see: Appendix Six ).

They argue that closer working links with other community organisations would have further enhanced these positive experiences.

“Exercise helps us to focus on the positive aspects of our mobility”
Person with MS, Dawes 2010, p 9

Dawes (2010) investigated how people with LTNCs can complement and extend hospital-based physiotherapy services by taking exercise in their local community fitness centres. She found that, with the right expertise available (informed fitness specialists and access to physiotherapy advice), people with LTNCs were able to sustain planned exercise programmes. This required educating all those involved and good communication between the relevant health professionals and local fitness centre staff and shows the value of greater awareness of LTNCs in mainstream facilities.

“When I’m older I want to do mechanics and stuff like that. I’d really like to do a car up – a race car or something…get my hands dirty and mess with cars and stuff like that.”
Young man living with DMD, aged 15, Abbott and Carpenter, 2009, p13

Playford’s study (2010) of vocational rehabilitation services (VR) found little evidence of services designed for people with LTNCs being delivered in either community or vocational rehabilitation to the standards recommended by the British Society of Rehabilitation Medicine (BSRM) (BSRM, 2010). She calls for improved communications between specialist LTNC vocational rehabilitation services and employment support organisations so that people are better able to retain their jobs or return to work.

Leigh et al’s study of the palliative care needs of people with Parkinson’s and related disorders (2011) found the rapidly progressing nature of some of these conditions meant the severity of symptoms and care needs were similar to those of cancer, requiring equivalent levels of expertise. They make a case for developing and trialling new models of care, such as Specialist Short-term Integrated Palliative Care (SSIPC), to provide access to neurological expertise as and when specialist help is needed to tackle problematic symptoms. This is in accord with recommendations made in End of life care in neurological conditions - a framework for implementation, published by the NHS End of Life Care Programme (2011,

Jackson (2011a) also reports that carers did not trust generic advice services and felt more confident when they had access to specialist nurses, or specialist teams, especially when there was close co-operation between statutory and voluntary services. However, it was not only a matter of understanding a person’s physical needs in relation to their health condition; the issue of ‘hidden’ impairments was raised in several studies. Jackson describes ‘hidden’ impairments as those with a cognitive, behavioural or emotional dimension. Playford et al also talk about ‘hidden disabilities such as mild cognitive impairment and low mood’ (p35). This indicates the need for much better management continuity between different parts of our health and care systems, requiring increased awareness and more effective working links between mental health, neurological and social care services.

Bernard et al’s (2010) study shows that care co-ordination ‘over time, over services and over sectors’ was found to be an essential element of those services that provided management continuity and were particularly valued by people with LTNCs. Jackson found that where there was no-one to do this kind of co-ordination, or help to plan for the future, it became another role that carers or family members had to take on in addition to their caring activities (2011a).

Information continuity

Another integral aspect of continuity is the way, and the extent to which, information is shared between organisations as well as between professionals, service users and carers. This requires attention at a number of levels. At a strategic level commissioners and planners need good data collection, analysis, communication and consultation systems to keep them informed about their local populations so that services are commissioned appropriately in the first place. This was recognised by the Long-Term Conditions Implementation Team in publishing the 2010 Neurology Collection (Barr, 2010), a compendium of valuable resources, practical information and advice for commissioners. It includes the Needs and Complexity Data Scale (Turner-Stokes, 2008) which can be used to evaluate services in relation to need (see Appendix 6 for further details).

For cross-sector and multi-disciplinary teams to work effectively there need to be compatible information and record-keeping systems in place, as well as good awareness and relationships between people in different organisations and professional groups.

At an individual level much will depend on the nature and quality of the relationships that are established between service users and providers. Cook and Atkin (2011) describe how people with LTNCs and their carers are likely to be disadvantaged by knowing little or nothing about the implications of the health condition they are faced with. Conversely, although health professionals have knowledge of neurological conditions, at the beginning of an intervention they will know little or nothing about an individual service user’s life, experience and aspirations. This is another reason that the ‘communicative space’ they describe is important - to help create the right organisational culture for the relationship between a service user and professional to flourish on a basis of mutual information exchange.

Jackson (2011a) also discusses this in respect of carers and describes how some of them felt that their own need for information was overlooked from the point of diagnosis onwards. There is the same mutuality of need for information between carers and professionals in order for carers to share information about the cared-for person, especially when they hand over their care to someone else. This was shown to be particularly significant when rare conditions such as Huntington’s Disease were involved.

Fitzpatrick et al (2010) found that people with neurological conditions did not generally participate in Expert Patient Programmes. Bernard et al (2010) however indicate that, when they had access to self-management or impairment education programmes and peer support groups, where they could relate to each other’s experiences of a particular impairment, such initiatives were generally well received. These programmes were valued because of the information shared as well as the peer support they offered, although some people also found it difficult to be reminded of the consequences of progressive conditions and so preferred to avoid, or opt out of, groups. Such initiatives were usually developed and led by specialist nurses or CINRTs, with the voluntary sector playing a significant role in supporting or delivering them.

Carers were fulsome in their praise for the work done by national voluntary organisations, which often included providing information about research, new treatments and other topical news items. 
Jackson, 2011a, p92

There was recognition by service users that information should be easily available and appropriate for people with neurological conditions (which may include communication impairments) but did not always require face-to-face contact. People with LTNCs commented that they appreciated information that was available via a range of channels, e.g. via the internet, email, telephone and leaflets, so they could find it how and when it was required. National disability charities with a high public profile and internet presence were often perceived as trusted sources of information about neurological conditions which people turned to as a matter of course (Bernard et al, 2010; Jackson, 2011a,b).

Continuity of personal agency and social context

The two aspects of continuity of personal agency and social context reflect the extent to which organisations function to promote autonomy and enable social integration, economic inclusion and participation in everyday life. They are crucial considerations for health and social care because they highlight the constraints and barriers that disabled people may still encounter in their daily lives and communities. These include unreliable transport, inaccessible buildings and discriminatory attitudes all of which can have a negative impact on a person’s health and well-being.

Young people did not have much to say about the structure of services, or the processes of transition and of course this is no surprise. Their dominant concerns were friendships, their social life, their overall health, their families, and whatever they were doing day to day.
Abbott and Carpenter 2009, p148

Abbott and Carpenter’s 2009 study demonstrates the importance of continuity of social context to help young men with DMD to fulfil their potential. They give an example where care-support arrangements worked particularly well for one young man who went to university and whose package of care was commissioned from a care management company and provided by fellow students. It meant that he had autonomy and was able to take full advantage of the social life at his university.
Dawes (2010) identified that, in addition to lack of expertise about LTNCs, a further barrier to using community fitness centres was the lack of accessible, affordable and reliable transport, particularly in rural areas. The families and young men in Abbott and Carpenter’s study (2009) also reported what they found to be insurmountable difficulties with public transport which had stopped the young men in the study travelling independently of their parents.
Overview and spotlight studies highlight the extent to which the right equipment and adaptations to a person’s home can contribute to continuity of social context. Jackson (2011a) describes how timely provision of equipment enabled carers to continue with their caring role, especially in the context of supporting people with deteriorating health conditions. Both Abbott and Carpenter (2009) and Cook and Atkin (2011) confirm that they make a positive difference to people’s lives once they are supplied or installed.

With regard to continuity of personal agency Cook and Atkin (2011) describe the characteristics of effective inclusive practice as those which define the experience as a shared, mutually respectful, positive and empowering one for both practitioner and service user.  They consider that that inclusive practice is essential for people with LTNCs and their carers to feel they are equal partners in planning their treatment and care and they describe the benefits for individuals’ self-esteem and confidence when they do feel this way. They conclude that a continuous process of education about the nature of ‘inclusive practice’ is required for those working with people with LTNCs to bring about the necessary cultural change for this to be the natural way of working.

Direct Payments and personalised budgets were introduced as a means of supporting greater autonomy by providing people with an income to purchase their care and support. Hoppitt et al (2011) and others (Jackson, Abbott and Carpenter, Bernard et al) all looked into how well they were being taken up and used by service users and carers. Their evidence indicates that they are not universally offered or taken up, but when they are they can be effective (as in the example of the young student just mentioned). It was also found that potential users of Direct Payments are not always well informed about what care and support options are available, which makes it difficult to take this responsibility on.

Playford’s study (2010) of vocational rehabilitation services (VR) recommends that money should follow the individual, via personalised budgets or Direct Payments, so that they can purchase VR and support with employment in a way that suits them best. She concludes by calling for improved capacity building, partnership working and staff training. Such an approach, she argues, would lead to more personalised support, as recommended by both the Black and Sayce reviews of specialised employment services (Black, 2008; Sayce, 2011).

Personal agency is used to mean retaining control over life, managing your own health and making informed decisions; social context refers to equality of opportunity and citizenship. Barnard et al (2010)



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