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Chronic Disease: Help, We're Drowning
- graeme mackenzie (30 January 2004)
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Voluntary organisation, an untapped resource in Chronic Disease Management
- Asa'ah Nkohkwo (25 February 2004)
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graeme mackenzie, GP Whitehaven CA28 7RG
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Any article highlighting the burden of chronic disease on the NHS is welcome. With increased screening for blood pressure and more significantly diabetes combined with charities highlighting the needs of "their" disease, it will not be long before the majority of patients in UK GP will have a chronic disease label of some sort. I would estimate that in our practice of 10,000 probably it is already at nearly 3000 if you include the whole range of diseases. Secondary care is incapable of looking after these problems. Its systems are just not geared to having the information at the point of care. They can only problem solve acute issues within the context of chronic disease. Even then I do not know how thay manage it given that they just do not have enough information available to do things in the right context. Equally it is impossible for me to transcribe all the information I have into a referral letter. We are destined to fail with chronic disease We need credit for what we do achieve. Secondary care and patients and patients relatives will always point out what we have not done as that will come out when there are problems. If you consider that most chronic disease care is not symptom driven and the range of parameters we have to collect and react to is growing daily, an 80 % or higher success rate is actually very good. Tough on the 20 % but if you judge us on the 20 % then the recruitment problems in GP will grow and grow. GPs do have the information and systems to manage chronic disease but we need more staff and to be blunt more GPs who have come to terms with the new world of primary care which is information management of patients with multiple chronic disease and on many drugs. The reactive, symptom driven, single issue patient aspect of the job is now the easy bit. On my more cynical days I see non symptom driven chronic disease health care as a game of pass the parcel, only in this game the skill is making sure you do enough to be allowed to pass the parcel on and make sure that you are not holding the parcel when the music stops (as it does in all of us eventually) In my efficient practice we see 7000 patients a year each. Many of them have chronic diseases and polypharmacy and need these managed at the same time as their acute presentations and many of them are part of the epidemic of mild depression and chronic anxiety. Many of them have little idea what drugs they are on and some have little idea that they even have the disease I am asking them about. If we do this all properly, the current set up in my practice will collapse within 5 years. As the ridiculous criteria for diagnosing diabetes continues to impose its tyranny on us, and the single issue lobbyists and empire builders impose more and more things to do and idly toss in more possible preventative work I look ahead with fear. The answer to this problem is that we will not do it properly because eventually my rights and those of my colleagues kick in and we leave our desks and go home, or we just dont do the care on that day. After all many of the patients have little idea whether they have had their chronic disease "done" that day or not. I do see this whole issue as a possible Armageddon for primary care. Rising standards imposed on us from people who actually never have to do this work and who cannot see that evetually we all have a chronic disease of some sort before we die. We need a compromise whereby "mild" chronic diseases are managed by the patient and through general health education and are not our responsibility. Like all compromises it will be a bit illogical but necessary. Bring back "mild" diabetes: whatever the diabetologists say it exists Competing interests: None declared |
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Asa'ah Nkohkwo, Director of the Society Sickle Cell Society, 54 Station Rd, London, NW10 4UA
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The recognition that the Third Sector might play a key role in a revised management of chronic diseases struck chord within the sickle-cell community. This, from the standpoint of the voluntary sector's untapped wealth of knowledge and experience in matters of patient involvement in their very own healthcare. The use of "Third Sector" is deliberate to reflect not only their uniqueness, but the great strides that voluntary organisations as a sector have made to catch up with contemporary advances in corporate management. They are therefore sufficiently sophisticated in capacity to significantly enhance the kind of partnership that the authors would appear to be addressing in the BMJ article. Here, also, follows a collation of anonymised comments (unedited as per our tradition) when this article was highlighted on the healthcare professionals electronic circulation list of www.SickleCellSociety.org . == Respondent 1, is a community involvement officer in Scotland: I have noted a couple of points from the BMJ article; The Sickle Cell Society might be encouraged by the implications that voluntary organisations will have greater opportunity to obtain NHS contracts, which it is hoped will lead to better integration of formal and non-formal healthcare resources. It will be useful for the Society to explore the opportunity available with the new general practice contracts, which will require a focus on chronic disease management (some financial incestives no doubt) The necessity and opportunity to establish a disease register will be a very useful development for the Society. As yet no national or even local register on Sickle Cell Disease exist anywhere. The Society can certainly make a play for the money to do this on behalf of NHS. As patients take greater responsibility for their health and management of their condition, there will be greater need for those patients to be provided with community based support. Again, something that can be explored by the Society These are some of the points that may immediately be useful for the Society to consider. I am also aware that anything that you do will have a cascading effect on your regional partners...e.g. Scotland. === Respondent 2, from London, is a member of the BMJ's Patient Advisory Group: Hello all... I have been following your conversation a little - and your mention of the INVOLVED PATIENT is one that caught my eye because it captures the concept much better than the expert patient. I can think of several studies in the disfigurement field where the informed, engaged, supported patient (and family) is found to adjust better - has the INVOLVED PATIENT concept been developed in theory and practice?? The question of how to INVOLVE patients is the obvious one... (not so easy re expert patients...) Go well all... for 2004! === Respondent 3 is Director of Public Health/ Medical Director of an SHA in London: Thank you Asaah, This article has sparked a lot of interest among modernisation teams and GP leaders, so the environment is right for raising the discussion. It is also timely to knock on doors and request that patient groups have a seminal say in the design of care pathways for the management of chronic disease. Many among us think that one of the greatest untapped resources in healthcare in the UK is the involved patient - in their own management and in the design of programmes. This thinking is gathering pace and hopefully you will not have to knock as hard on doors from now on! Thanks for the prompt. Competing interests: Dr Asa'ah Nkohkwo FRSH is chief executive of the Sickle Cell Society which employs grants to deliver community-based support care to those affected by sickle-cell disorders. |
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