A Resource Underused

Ryan Breslin, University of Cambridge School of Clinical Medicine, Addenbrooke's Hospital, Hills Road, Cambridge, CB2 0SP

If my recent experience in the third sector has taught me anything, it’s that support services set up for patients with chronic conditions play a vital role in the ability of service users to cope with their condition, and that state medical providers don’t always utilise these invaluable resources as much as they could.

A multitude of organisations exist across developed countries with the purpose of providing support and advice for sufferers of conditions ranging from multiple sclerosis, to diabetes, to cancer. Staff and volunteers dedicate many hours meeting the needs of their service users. These may range from advice and words of support to actual intervention; the provision of physiotherapy, for example, or the arrangement of necessary modifications to a patient’s home. My recent visit was to the Foyle Branch of the MS Society in Northern Ireland. Many service users in the Foyle area depended upon the organisation for their livelihood. A number of clients described how the provision of physiotherapy, tailored specifically to their needs, enabled them to cope better with their pain and engage in a more normal life. They described the positive impact social events organised by the charity had on their mental health and outlook, and were open about the fact that they depended on services such as minibus transport.

Specialised knowledge that accumulates in a charity such as the MS Society seems to be a particular benefit, and many of those using the services reported that this was a significant factor in the impact of the organisation as it often surpassed what was available within the NHS. For example, at one physiotherapy session, the service users described their discontent with NHS physiotherapy for MS patients claiming that it was aimed too much at rehabilitation and not at the long term management of a chronic condition. They compared their experience of the NHS to their experience of the MS Society and felt that sessions with the charity were not only much more helpful and easier to take part in, but also much more enjoyable. The knowledge of what works best for these patients is acquired by professionals working on an ongoing basis with patients suffering from their specific condition, and can sometimes be difficult to rival in the NHS for a variety of reasons, despite our best efforts.

Many of those involved feel that they provide a service which should fall under the remit of the government’s provision of health care, but despite that, local medical authorities still seemingly fail to refer patients on to them when it would be in the patient’s interest to do so. The feeling in these organisations seems to be that the medical profession could be more proactive in helping them to help us. Many of the patients I spoke to had received no help from their consultants in finding the MS Society, and many wished they’d been told about it much sooner. The staff and volunteers described how there is minimal communication between professionals in the charity and consultants in the NHS, despite both of them working with the same clients for the same reasons. With doctors now being trained to see more than just the patient’s physical disease, and pay attention to their all- round illness and the effect it has on their life, should we be doing more to improve accessibility to such services for our patients, and work better with them once our patient becomes their service user?

These organisations represent a valuable resource; they are already in place with expertise waiting to be used, and can potentially improve the lives of patients whilst often saving money overall for the authorities that use them, since most of them are self-funded charities. A recent report by the Voluntary Organisations Disability Group [1] concluded just this and recommended an expansion of such co-operation, especially in the current economic climate. Many mutually beneficial alliances are already in place across the country and commitments are being made which aim to utilise the third sector more [2]. The problem however seems to be that not only is there the potential for so much more co-operation that isn’t yet happening, but there is a variable degree of utilisation of these organisations between different Primary Care Trusts.

Groups associated with conditions that are topical or well-known to the public get many referrals from consultants, and patients sometimes already know about the services available before they even need them. But smaller support groups don’t have the same luxury. One problem is that many of those charities and organisations providing support for these types of conditions are the ones we hear nothing about until we ourselves know someone with a need to use them, and there is evidence that the bigger charities grow preferentially to the smaller ones [3]. Smaller and less well-known groups often rely on the distribution of leaflets around NHS premises and depend on medical professionals remembering that they exist when we encounter patients who may benefit from their services. They try hard to raise their profile through advertising and fundraising campaigns, but unfortunately most of those in existence lack the funding to be able to carry this out to the level required. If medical staff don’t know that such services exist, inevitably patients will not be told where they can find additional help, and there is a feeling that staff who are aware of these services should do more to ensure that patients are aware of what is available to them. There is no doubting that in principle the desire is there for health care professionals to refer to these services, but it requires doctors on the front line to actively point patients in their direction, and the patients are telling us that we could do more.

With the internet there is little that the public cannot now find for themselves, but shouldn’t we be doing more to promote awareness of these organisations among patients? Would a national, online, searchable database of third sector organisations be useful if it were categorised by conditions for which help is provided and the services that are available? Could doctors use such a resource to help sign-post patients in the right direction quickly and efficiently without it impeding on a consultant or GP’s already heavy workload? Or should we simply be more aware of our patients needs outside of the strictly medical and be prepared, or even expected, to offer to find support groups for patients using what resources we have at present? We have in existence readymade organisations wanting to add to the care of our patients, in a way that arguably we should be doing ourselves, but they are telling us that we don’t refer on to them enough. Are we missing a trick here?

References: 

1. VODG 2010 Gain without pain; A VODG report on how the voluntary sector can save time and money. http://www.vodg.org.uk/uploads/Gain_without_Pain_Finalprintedversion.pdf

2. NHSScotland 2010 The Healthcare Quality Strategy for NHSScotland. ISBN 9780755993239 http://www.scotland.gov.uk/Publications/2010/05/10102307/0

3. Clifford & Backus 2010 Are big charities becoming increasingly dominant? Tracking charitable income growth 1997-2008 by initial size. http://tsrc.ac.uk/LinkClick.aspx?fileticket=ROx6x3orD1o%3d&tabid=679