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How do you find good information?

A Norwegian qualitative study and the importance of self-help

Posted by Madeleine Speed, the Pelvic Partnership, July 2016

shoppingWhen we are looking for more information about a health problem, we probably go straight to the web and start surfing. There are all kinds of websites offering healthcare information and it's become something of a cliché that if you experience uncomfortable or painful symptoms, you can probably find evidence from these websites to support any number of debilitating and possibly life-threatening conditions you might have to mirror your symptoms.

Although there's an element of truth in this cliché, it shouldn't blind us to the huge potential of using the Internet to increase our knowledge of health-related subjects. The Internet is one of the fastest growing information resources and it is also relatively low-cost. Although self-diagnosis can be a dangerous game, there are benefits of finding out more about our health and wellbeing by looking at reputable websites such as NHS Choices, Patient or key charities (such as BHF and Cancer Research UK). Raising awareness of a particular condition by reading up about it can help us to feel much more informed and less panic stricken ahead of going to see the GP for a diagnosis and course of treatment. You can also feel much more aware of standard procedures and what to expect when you are sitting waiting for your appointment.

A recent study in Norway found that web-based discussion forums among pregnant women are very popular. The study revealed that this group of women look to additional sources of information and support to supplement traditional visits to healthcare professionals. The study suggests that women who use such web-based sources of information and support increase their ability to take better health decisions for themselves by increasing their knowledge and understanding.

The Pelvic Partnership recognises how empowering it can be to find out information about a health condition or ongoing health concern. Pregnancy-related Pelvic Girdle Pain (PGP), for example, is often (wrongly) regarded as 'being caused by hormones' and something which 'will go away as soon as the baby comes'. A quick look at the Pelvic Partnership website shows some classic examples of PGP symptoms as well as the true, biomechanical cause of the condition. So, in a short time, it is very easy for a reader to see some of the typical misconceptions of PGP (if you will excuse the pun) as well as the real causes of the pain and discomfort associated with it.

SPD logo 4col smallWe purposely populated the charity website with a vast amount of information. This runs contrary to the approach of many websites where the thinking is: that we are all so busy and have limited time available for sourcing information that it must be in manageable, bite-sized amounts. We took a different approach. When we last refreshed the website and increased the amount of information within it, it was to help relieve the pressure on our telephone helpline. This pragmatic step helped us to make our helpline enquiries more manageable. However, it also enabled us to encourage women to find out as much as possible for themselves about pregnancy-related pelvic girdle pain (PGP) by encouraging readers to look at the menu on our website and sift through a wealth of practical information, facts about the symptoms of PGP. Readers may want to have access to a quick overview but those who want to look for more detail can drill down to find out much more about PGP, its symptoms and how to look for suitable treatment.. 

Of course there are dangers for individuals who want to take up the offer of becoming better informed. As we have probably all found, it is very easy to come across poor or misleading information which is purporting to be fact. For those who are struggling to find support and answers to their situation, it is easy to become vulnerable to false leads and speculation masquerading as truth. It is important to keep an open mind but also to guard against being taken in by improbable and questionable information (by cross referencing, asking professionals, checking out purported facts).

Thankfully, it is possible to come across well intentioned and very useful information by looking at well respected websites such as those for dedicated charities. We think it is worth increasing your knowledge of a given health subject particularly if it is linked to following up this self-help approach by asking your health visitor, nurse or GP for a highly personal assessment of your own situation.

The Pelvic Partnership's website gives a vast amount of information about PGP and how to manage it. We have taken the stance that it is better to encourage free and open access to information and we actively search for new, evidence based studies about PGP and the latest examples of best practice in how to treat it successfully.

Self help can be a very liberating and powerful tool which helps to promote self-reliance and responsibility for our health and wellbeing. It can also motivate us to take suitable action such as finding a good healthcare professional and the treatment we need. So why not spend a few minutes now looking at our website and seeing if you can spot new information that you haven't seen before?

If you are familiar with our website (or you have just visited it) and you have found the information about PGP useful, please consider making a donation to us so we can continue with our work. This can be done easily by clicking here and completing our on-line donation form; all donations are very much appreciated and will help us to continue providing information and support for women with PGP, their families and the healthcare professionals caring for them.


Help us to take the next step in our 'Stickmum' campaign...

Posted by Madeleine Speed, the Pelvic Partnership, June 2016

Stickmum small advert

Please take a look at our new Stickmum video (see below under 'the next step') and pass on the link to others. Together we can reach many more women and healthcare professionals to improve the care of women who have pregnancy-related Pelvic Girdle Pain (PGP).

The Pelvic Partnership ‘Stickmum’ Campaign - the story so far
Our mission as a charity is to improve the care offered to women who have PGP and although the Pelvic Partnership has been providing information about PGP for over 14 years, we regularly receive evidence that confirms that this condition is still poorly understood in the UK. Without prompt diagnosis and suitable treatment, the symptoms of pain and immobility can be needlessly prolonged.

So, we found an ambitious and effective way to raise the profile of PGP. At the end of 2015, the Pelvic Partnership produced and distributed over 100,000 'Stickmum' leaflets to frontline healthcare professionals throughout the UK by including them in GP, midwifery and physiotherapy professional journals. A generous individual donation coupled with a Big Lottery Fund’s grant of £10,000, enabled the charity to launch the campaign.

The aim of the leaflet is to inform healthcare professionals and women with pregnancy related PGP about what PGP is and how it can be effectively and quickly treated with manual therapy (you can see and download the leaflet here). At a time when services are continuing to be reduced or cut, our objective is to provide a clear and accessible resource for healthcare professionals so more women with PGP are diagnosed quickly and offered effective manual therapy to treat their symptoms successfully.

We also asked visitors to our blog, like you, plus women with PGP, our members and friends of the charity to continue to spread the word about PGP by encouraging everyone to visit our website, to learn more about the campaign and to download a copy of the leaflet (you can see and download the leaflet here). In this way, increasing involvement in the campaign can help us all to pass on the good news about PGP and how it responds well to treatment through manual therapy. We have suggested that members of the public take a copy of this information leaflet to the healthcare professionals caring for them or to their local GP surgeries, midwifery units, and physiotherapy departments. In addition, healthcare professionals can pass on the leaflet to colleagues and trainees so that the leaflet is used as a resource to maximum benefit. 

Positive feedback since the Stickmum launch
Since the launch of this project, the Pelvic Partnership team has received a wealth of positive feedback and we are delighted that healthcare professionals have welcomed this initiative. Below are some examples:

‘I wanted to thank you for your article in Frontline. I am a MSK physio who had the fortunate experience during my junior rotations working with amazing physios who treat PGP with manual therapy. We had a service that would regularly see pregnant women and the results of specific manual therapy to the sacrum or pubic symphysis was very successful. Now, eight years later I have treated many, many women with PGP before and after pregnancy with very good results. In fact I have seen a lot of people who have PGP for years and when treated it immediately reduces implying that the pelvic girdle is the issue not "chronic pain" as they had been previously told.’

‘Thank you so much for sending me some of the Stickmum leaflets!! Such a great resource!! Even my husband (GP) has been exposed to them at work so you have hit the marketing right! Would love to provide them as routine at work.’

‘I received my Practicing Midwife magazine and was delighted to see your organisation's work to help pregnant women with PGP. I am a midwife with 34 years’ NHS service and it is definitely on the increase, never used to see so many women on crutches. Your article and booklet are extremely informative.’

Our Stickmum leaflet appeared in Dr Chan’s minor ailments forum on YouTube – ‘this video explains what pelvic girdle pain is, or SPD (symphysis pubis dysfunction) and its management in pregnant ladies. I have also included the information on a new charity called the Pelvic Partnership for the viewers to get more information on this conditions and for support: https://www.youtube.com/watch?v=LK7xtLvBdiY

‘Congratulations to the Pelvic Partnership for continuing to raise the profile of Pelvic Girdle Pain and the effective treatment thereof. Your website is a wealth of useful and sanity-saving information and advice for women struggling with this debilitating condition. Keep up the good work and we will continue to promote and support your cause.’

We have also continued to receive requests via our website and telephone helpline for Stickmum leaflets from healthcare professionals many of which also enquire about how they can learn the effective manual therapy techniques to treat PGP. This is the first time we have had so much interest from healthcare professionals as previously we have had funding mainly to enable us to reach out to and support women with PGP.

The next step
We want to capitalise on the success of the initiative by launching a campaign video on our website and also on YouTube. So here it is! The aim is to reach more healthcare professionals and women with PGP who access information regularly via video footage online. The campaign video features our likeable Stickmum characters again and the key messages from the leaflet and aims to appeal to anyone who appreciates the immediacy and simplicity of accessing video data via their laptop or computer.

Here is our NEW 'Stickmum' campaign video:



 

 

 

 

 

 

 

 

How you can help us spread the word further...
Just as you have responded so well to our request to download and distribute our Stickmum leaflet, please can you view and pass on the link to this video?. Again, talk about the video and forward it to family, friends, your GP and other healthcare professionals (health visitors, midwives, physiotherapists) so you can help us all to spread the word about PGP and how it can be treated successfully through prompt diagnosis and treatment. Do let us know what you think about the video and pass on any comments and feedback to us. Thank you!

Charity Registered in England: 1100373                                           © Copyright Pelvic Partnership 2017
 
Please note, the Pelvic Partnership consists of volunteers who have had Pelvic Girdle Pain and wish to support other women. We aim to pass on information based on research evidence where available. We are not medical professionals and cannot offer medical advice. The Pelvic Partnership takes no responsibility for any action you do or do not take as a result of reading this information.
 
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