Expert Patient Service User Mentor

The EPPCIC has a really interesting project on the go at the moment; using the experience of expert patients to introduce health & social care students early on in their careers to the reality of living with and managing long-term conditions.

Increasing awareness of the reality of these conditions is important, and when better to install this than during the first years of their professional lives?! Having the information delivered in a personal way through mentors should make the learning process two-way and interactive.

What a great model - it can applied to lots of awareness schemes I think!

Glass half full really is better!

Another interesting study that I have come across on my Open University course; the benefits of positive thinking!

A study by Maruta et al. (2002) reports that pessimists have a lower quality of life and below average physical and mental health. Your 'explanatory style' has a significant effect on your health.

"Wellness of being is not just physical but attitudinal. How you perceive what goes on around you and how you interpret it may have an impact on your longevity, and it could affect the quality of your later years."

The power of control

 Even people adament that they are not control freaks can benefit from having control over their lives. In 1976, Ellen Langer and Judy Rodin did a study on the effects of residents in a care home having control over their lives. The group that were given choices such as to rearrange furniture, care for a plant, and to decide what night to watch a film were more alert, active and reported a higher sense of wellbeing (physical and mental) than the control group that were not given such control. The big impact was on mortality; 18 months later, twice as many people in the control group had died.
The concept of "learned helplessness" that is so well documented in other mammels has been seen in humans too.The absence of hope does shorten lives!
Sadly, Langer has since reported that little has changed in carehomes since she published the study. The mentality of CURE rather than CARE has caused society to overlook these simple interventions.

Listen to the full BBC Radio 4 programme here.

BMA Self-Management

The BMA have a page dedicated to their efforts on training GPs in supporting patients to self-manage their own long-term condition (see here). It has some great ideas, and identified the needs of these patients . . . . . but I can't see what is being activly done to raise the awareness of these ideas/needs with a GP?!

The joint PLG and GPC paper recommended that “Every person diagnosed with a long term condition should know how to gain information on their condition and how to develop their self management skills through education available from the NHS and voluntary and community sector organisations. Every patient should also know who, as well as their GP, may be able to give advice and support.” 

In order to better self manage their health, patients need be able to:

• get information about their medicines and advice about taking them
• understand their test results and what they mean for the management of their condition
• find sources of reliable and up to date health information to meet their specific needs
• find out about national and local support groups and organisations
• know about generic or condition-specific education programmes that could help them self manage better
• gain access, where appropriate, to technologies to assist them in self monitoring and self medicating.

The value of Peer-to-peer support

Mike Slade in The guardian has just written a really positive article about the value of peer-to-peer support for patients with mental health conditions. I think it can be a really effective tool for patients with any health problem; mental or physical. They provide "an expectation that a life worth living is available", but can also be honest about the process of finding that in a way someone not having had lived experience would find difficult to convey. The journey will be good and bad - they can portray that, but still leave hope.

Read it here

Patients Association: "GP Duty to Refer"

The Patients Association is an organisation to collectively campaign for and support patients through the most common experiences felt across any condition. They have a really interesting pledge in their manifesto, "GP Duty to Refer",which focuses on getting healthcare professionals to signpost patients to relevant charities and support groups and sources of information.
Apparently only 2% of members of the Meningitis Trust were signposted there by doctors!
These invaluable resources need to be used, and awareness needs to be increased! The NHS can not 'commission volunterring' without letting people know about the vital services they are relying on!
Read the full details here: http://www.patients-association.com/Default.aspx?tabid=212

An Eco NHS?!

The NHS has often been described as 'unsustainable' but it is very rarely meant in the environmental way. But the concept of recycling is slowly being considered . . . with old medications. I certainly have a collection of odd packets from drugs I no longer take, and this article on the BBC suggests I am not alone! Recycling these spare drugs would save money and potentially energy too! I understand the safety concerns, but I would hope they could be overcome!

Read the full article here: http://www.bbc.co.uk/news/health-17219584

Further to my previous post: Radio 4 HealthCheck: Web information

Expanding on my previous blog about the level of literacy needed to accurately take on board medical information online, the BBC have written an article about the effect of poor literacy on patients when taking medications. As Dr Barry Parker discusses, having health information is important to promote public health and increase awareness, but the disproportionate amount of this information that is presented in the written form could be really difficult for a subset of patients. The fear is also that the abundance of online information is replacing the face-to-face explanations given by consultants of the medical condition.

Very thought-provoking and interesting arguments!

Read the full article: http://www.bbc.co.uk/news/health-15478753

Neurological Alliance fighting a worthy cause!

The Neurological Alliance looks after the interests of patients with neurological conditions, and campaigns on their behalf. One of the problems that they have identified with the Health and Social Care Bill that Parliament has proposed is the lack of care for patients with rare conditions. Neurology as a speciality is very diverse and challenging and includes more than its fair share of rare diseases, as well as the most common strokes and dementia. They suggest that the new local commissioning style will make provision for these rare conditions not cost-effective, and therefore not provided. No decision the NHS has to make is going to be easy, but one would hope that cost-effectiveness is not given absolute priority in all cases. Although rare by definition, the number of patients that suffer from all the rare diseases is actually quite considerable, 1 in 17 people, and that many patients can not be left on the dark. If the commissioners say 'no' to providing adequate services for rare diseases, they are not treating a very large number of patients, 3.5 million patients in the UK!  
"Collectively rare diseases are not rare"
See Rare Disease UK for the stats on patients affected by rare diseases
See Neurological Alliance PR

Email and Text coming to the rescue for delivering effective care to patients?

When you are tired and depressed and anxious, would seeing a real person in the flesh and talking through the problems be a more obvious choice than using the cold and impersonal electronic communication channels at our finger tips?

Two recent stories have talked about the effective trials of psychological services being delivered via text or email - with amazing results! Radio 4's You and Yours, were discussing the new App called 'Buddy' that texts patients questions relating to their mood and generating a continuous picture of their psychological condition. Listen to the show here, and read more about the app here. The BBC Health website has recently reported on some Dutch research into the effectiveness of email-based psychological therapies in young patients with Chronic Fatigue Syndrome. Read the full article here.

Nothing should substitute the face-to-face consolations with healthcare professionals, but these additional communication channels could provide (like the telehealth systems) valuable information that makes the face-to-face consultations more useful. And the results are certainly impressive!