Conclusions

This overview report has summarised the evidence from the LTNC RI in order to consider what progress has been made in respect of meeting the objectives of the NSF for LTNCs. It draws on ten very different, but complementary, studies to give us a comprehensive snapshot in time. The picture it presents is one of variable and patchy service provision, which is characterised by lack of continuity between services and which, on balance, does not serve people with neurological conditions consistently well.

The research shows that the expertise available from specialist health services is highly valued by those that have access to them, but there are still parts of the country where this is limited, or only addresses certain neurological conditions. The inter-connectivity between these specialist health services and others in social care and community settings needs to be improved. We need to share professional and personal expertise more widely to increase opportunities for support and practical help.

There is a negative impact on carers’ health and well-being when they have no choice in taking on a care coordinating role, particularly at critical transitional stages, such as at the point of reaching adulthood, or at the end of life. The costs of this happening are demonstrable and unacceptably high in terms of their own, and their cared for person’s, health and well-being and for society as a whole.

The right equipment and adaptations have been shown to play an important part in supporting caring tasks, helping people to self-manage, to be independent and to prevent injury. There is a lot to be gained from making better use of emerging technologies and for independent living equipment to be more readily available to all requiring it.

It is also clear that people with a LTNC are doubly disadvantaged by poor communication, information and demand management systems that make it difficult for them to access services as and when they require them. Feeling that they have to fight to get the right support adds unnecessary stress and has been shown to have a negative effect on mental health, with all the treatment costs that entails. As the research demonstrates there are cost savings to be made in re-designing services to deliver improved outcomes.

Social and economic inclusion and autonomy will be greatly enhanced by improving health and social care, but only in the context of a more accessible, open society in which the life experiences and contributions of people with neurological impairments are recognised and valued. This requires ongoing public education and awareness-raising programmes to change attitudes and behaviours.

There are both opportunities and challenges in addressing many of the issues raised by the research in the current climate of economic austerity. Opportunities exist in the Government’s plans to reform health, social care and public services so that they offer high quality, person-centred responses (DH, 2010). The re-designing of health and social support services that embrace the requirements of people with LTNCs will lead to those services being more accessible and effective for everyone.

The challenges include the gaps that remain in the evidence for the economic benefits of some of the interventions and approaches recommended in this research. We need to know more about aspects of being diagnosed, what types of day care and community support are affordable and work well in the long-term and what people with LTNCs require from self-management programmes that is different from what they get from other generic expert patient programmes. Little is still known about what needs to be done to develop a diverse care market so that there is real choice for people to use personalised budgets.

It is clear from the evidence considered here that people with LTNCs and their carers do not have unrealistically high aspirations or expectations for care and support – they just want to get their lives back. The evidence from this initiative has helped us to recognise the degree to which people can be marginalised by the very health and care systems created to support them. This is not to deny the hard work, expertise and commitment of people who work in health and social care, who also recognise and can be frustrated by the organisational limitations on them.

The term ‘long-term conditions’ (LTCs) has become short-hand in policy documents, among health professionals and policy makers for the more common medical conditions, such as diabetes, back pain or chronic heart disease. These conditions are now becoming better understood by the general public and recent initiatives have led to improved continuity and the development of self-help and healthy lifestyle programmes (Ipsos Mori, 2011). The same needs to happen for neurological conditions. At present they are not routinely part of our lexicon of care and support systems. This implies that leadership on neurological conditions needs encouragement and facilitation at local and regional levels to ensure they are given appropriate priority and allocation of resources.

Advisory Group members affected by neurological conditions have been part of this initiative from the beginning. Their experience has helped to shape the questions that were asked and they have questioned the findings as they emerged. They have played an essential role in keeping us focussed on the outcomes they need. This is the clearest message from this research initiative. It is only when the interests of people who use services are at the very heart of their development that we will start to deliver the effective, efficient and high quality services they have every right to expect.

 

 

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