Sunday, 10 February 2013

Health Care in England for MSers

#MSBlog How would you design a service for MSers to integrate both healthcare and social services? I see trouble ahead!

Peters et al. Patients' experiences of health and social care in long-term neurological conditions in England: a cross-sectional survey.J Health Serv Res Policy. 2013;18(1):28-33

OBJECTIVES: Investigate MSers' experiences of health and social care services in long-term neurological conditions in England.

METHOD: Cross-sectional survey of 5209 members of the Motor Neurone Disease Association (MND, n = 890), Multiple Sclerosis Society (MS, n = 2345) or Parkinson's UK (PD, n = 1974). A questionnaire on patient experiences of health and social care was completed by 2563 (49%) (505 MND, 1157 MS and 901 PD).

RESULTS: A mixed picture of experiences of health and social care in MND, MS or PD was found with few problems reported for some aspects of services such as obtaining information about medication (n = 117, 6.1%). In contrast, problems with planning and integration of care were reported frequently, with 78.0% of people not having a care plan and 61.9% reporting that services do not collaborate well in planning care. Other problems included delays with diagnosis, information about medication side effects, and management of conditions whilst in hospital. Significant differences between the three conditions were found for most aspects of care, with MNDers generally reporting fewer problems. The findings highlight which areas of health and social care need to be improved and monitored. While a larger sample size was obtained than in other studies, possible limitations include the sampling frame and the 49% response rate.

CONCLUSION: Planning and integration of care are key areas that require improvement.

"The integration of healthcare and social services is a major problem in all countries, except for the Scandinavian countries that have the resources to achieved this. It is likely to get worse in the UK with the budget cuts and reconfiguration of the NHS. There is an interesting news item in the BMJ from this week that discusses the new role of NICE in this process and how it may 'take the blame' for the changes."


Matthew Limb. NICE likely “to take blame” as healthcare budgets tighten, chairman says. BMJ 2013;346:f749

...The UK National Institute for Health and Clinical Excellence (NICE), the body that appraises treatments for the NHS, can expect to come under fire as a “perfect storm” of financial and organisational pressures on the health and social care systems approaches, a conference has heard....

...NICE’s remit for producing guidance and quality standards on social care will expand on 1 April 2013....

...Its chairman designate, David Haslam, told a Westminster Health Forum seminar.... the effect of an ageing population and increasing cost pressures in health and social care meant that difficult funding decisions would have to be made....NICE may well be part of the solution to the problem of “postcode lotteries” in health services, he said, but any organisation that was part of making health related decisions linked to the issue of cost, when faced with a finite budget, would face real criticism, he said....

...NICE as ideally placed “to take the blame.”...

Haslam, ... , said that the boundary between the NHS and social care was “extraordinarily blurred.”...

...“No one in their right mind would have devised a system from scratch in which [the organisation of] health and social care are different,” he told the seminar in London on 31 January....

...He said that the government’s restructuring of the NHS and public health systems had led to lack of overall clarity and that it was vital that NICE worked well together with the Care Quality Commission and NHS Commissioning Board to deliver coherence....

“We do face this perfect storm of confusion and duplication in the brave new world that faces the NHS after 1 April,” he said.

"I suggest reading the full article of more detailed insights about what is about to happen."

6 comments:

  1. But health and social care is essentially the same thing. When Clement Attlee and William Beveridge laid the foundations of a post-war consensus, provisions for better and fairer living became the cornerstone of British culture. It was this kind of thinking that enabled a man like MouseDoctor, the Northern working-class son of a deceased postman and dinner lady, to get his PhD and become a scientist. Even though I criticise some of his methods, he is a testament to how Britain created possibilities, enabling a man from the lowest social ranks to work on ideas to better the lives of others. I strongly believe that the upper-classes are unable to engage with society at large, hence why the current Coalition of posh-boy politicians are systematically attempting to make life harder for those that are most at need.

    One simply cannot afford to get ill in modern Britain. If you do succumb to disease, the advantage is having pre-established affluence. This way you can pay for your needs without relying on state support, which is slow and inefficient at best. If you pay for your own health care then your doctor is obliged to provide value for money. If they fail in doing that then you take your custom elsewhere. The problem we have in the NHS is that it is worryingly coming apart at the seams. In the case of the Staffordshire Hospital incident it is clear that institutional ill-intent was practiced on a mass scale. Doctors, nurses and sundry personnel actually engaged in conspiring to kill patients. It was like something out of a horror movie. This was state sponsored psychopathic execution. We paid our taxes to fund such a heinous act. Nobody has been held accountable for this and it is only right that we try and figure out where the buck stops. If NICE is the end of level gatekeeper, then so be it.

    I have been accused on this blog for being anti-medicine, which is not true. I am simply against institutional corruption. If drugs for MS actually fixed neurological damage then they would be worth the price, but there is no proof of that happening. However, it is interesting that this blog reported today that there is growing evidence that doctors to not listen to their patients needs. For example, spasticity is routinely underestimated and overlooked, ineptly treated with horrendous medicines that turn MSers into living zombies. We need a better and more modern approach.

    The NHS is dying, guys. Not only that, it is killing us in return. In the case of MS, either patients are losing faith in their neurologists or the neurologist is losing interest in their patients. We are in the dying phases of living in a caring society. The accounts of corruption at Barts and the London are further proof of an institution in which doctors have essentially become greedy moneymakers, placing wealth before care.

    The system is broken and cannot be fixed. It is beyond hope. Even the caring doctors are at the mercy of apathetic practices. The NHS has been killed off by Thatcher’s Children. We cannot trust the NHS anymore. We cannot believe our doctors and nurses want to help us. We cannot put our faith in a system that absolutely hates ill and disabled people who lack monetary provisions and have to rely on the state for basic care. The actuality that disabled people are being told to only expect one bath a week In order to save costs says it all really.

    Prof G, the systemic failures of the NHS are far beyond your control. You’re wasting energy. There are too many bad eggs festering within it. Cut your losses and focus on better living.

    ReplyDelete
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    1. Being an American, this is my biggest fear. I have expensive insurance and my employer funds part of it. I pay $630 /month for coverage for me and my children. I have freedom and choices. I pay $20/month for Copaxone.

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    2. Anon, I'm interested to know how this works in the US. What happens if you can't afford insurance or can no longer afford insurance to change in circumstances ? What happens if you have a pre existing condition before you take out insurance ? Surely insurance is based on risk and if that risk is so obviously stacked against the insurance company in insuring someone with MS, then gaining adequate cover would be virtualy impossible ? What is the safety net ?

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    3. Dr Dre,
      A fine piece, whilst I agree with most of what you're saying and think this is an orchestrated effort on the part of the Government to make the NHS so unworkable as the average person will not be sad so see it go,I do believe there will always be hope. This is most definitely a legacy of Thatcher's Britain, where greed was good and an 'I'm all right Jack' attitude was something to be encouraged rather than despised, but I feel there is enough compassion and decency in the majority of the popualtion of this Country to wake up and smell the coffee before it's too late, despite The Daily Mail's attempts to fill everyone with hatred.

      http://www.youtube.com/watch?v=pY_pgqX8qyo

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  2. Dear Mr Gavin,

    I have a couple questions connected to the endpoint "Confirmed disability progression" as an endpoint in clinical studies, which I hope you can comment:

    When you read about that a MS-agent, at 2 years clinical study duration, reduce the risk of 12 week confirmed disbality progression by XX % vs placebo. What does that mean (?) - I don´t quit understand the meaning of it (?) Is it reffering to the fact, that the disabilty must be confirmed 12 weeks after the 2 years duration of the clinical study or what?

    Linked to this, I see in some reports that they use a more stringent criteria (!) with regard to disability progression; it must be sustained for 24 weeks.

    NOw, I would be happy if you could explain:

    1.
    Do you measure, that to be defined as a diability progression, the disability must be sustained for 3 months after a performed 2 years clinical study; i.e. 2 years + 12 weeks ?
    2.
    Depending on what your answer will be on the above question, isn´t a
    a more reliable, stringent criteria, to measure a sustained diability 6 months (24 weeks) after a clinical study with a duration of 2 years has ended ?

    If the disability is confimred 6 months after the 2 years study has ended, it is, in my view, more reliable than if it is confirmed 3 months (12 weeks) after the study has ended ?

    My above conclusions, of course, depending on from where on the time line you start to measure sustained disability progression; in my interpretation, ´starting point is after completion of 2 years clinical study. At that timeline, you see what disability the patient has - and to be confirmed as a disability, it must be sustained for 3 months after the clinical 2 years study has finished ?

    Hope you can clearify those issues for me and others.

    Sincerelly

    Anna

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    Replies
    1. Re "When you read about that a MS-agent, at 2 years clinical study duration, reduce the risk of 12 week confirmed disbality progression by XX % vs placebo. What does that mean (?) - I don´t quit understand the meaning of it (?) Is it reffering to the fact, that the disabilty must be confirmed 12 weeks after the 2 years duration of the clinical study or what?"

      It means that if someone starts at EDSS 3.5 and progresses in the trial to EDSS 6.0 or needing a walking stick they need to be assessed twice as having an EDSS 6.0 to be called sustained or confirmed increase in EDSS. If these assessments are 3, 6 or 12 months apart this called sustained or confirmed EDSS progression at 3, 6 or 12 months. Some people may improve before this assessment and therefore will not qualify for this outcome.

      "Do you measure, that to be defined as a disability progression, the disability must be sustained for 3 months after a performed 2 years clinical study; i.e. 2 years + 12 weeks?"

      Only of the EDSS increased in the last visit of the study, i.e. at 2 years do you need to assess them 12 weeks later. Most trials ignore these assessments and power the study for events that can be confirmed before 2 years.

      "Depending on what your answer will be on the above question, isn´t a
      a more reliable, stringent criteria, to measure a sustained disability 6 months (24 weeks) after a clinical study with a duration of 2 years has ended ?"

      That is correct. Some people are arguing for a 12 months endpoint.

      Re "If the disability is confimred 6 months after the 2 years study has ended, it is, in my view, more reliable than if it is confirmed 3 months (12 weeks) after the study has ended?"

      We use a survival analysis to assess disease progression. Once you have progressed in a study you can't progress again. That is why we tend not to examine study subjects past 2 years as those that progress at the last visit (2 years) make up a very small number and don't add much to the power of the study.

      Re "My above conclusions, of course, depending on from where on the time line you start to measure sustained disability progression; in my interpretation, ´starting point is after completion of 2 years clinical study. At that timeline, you see what disability the patient has - and to be confirmed as a disability, it must be sustained for 3 months after the clinical 2 years study has finished ?"

      Disability progression can occur at any time during a study; less than 10% or even 5% of confirmed progressions occur at the end of the study!

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