Improving awareness and understanding of young people’s hip conditions.
Patients, clinicians and researchers investigating Hip Dysplasia, Perthes and Slipped Upper Femoral Epiphysis.
On 28th October, as part of a series of Economic Social Research Council funded seminars, Hip Pain Cardiff will be focusing on the consequences of paediatric developmental dysplasia of the hip (DDH) and changes that need to be made.
Patients, family members and carers will be joined by leading Orthopaedic Surgeons John O’Hara and John Clegg at Cardiff University to discuss how diagnosis and treatment can be enhanced, pain can be managed and lives can be improved.
Sally Scott, Consultant Radiologist will also be speaking together with Natalie Trice from Spica Warrior and Emma Morley from Steps both of whom have personal experiences with the condition and work in the field. There will also be the opportunity for networking as well as Q and A Panel sessions.
Tina Gambling, Director of Postgraduate Research at Cardiff University, said, “At Hip Pain Cardiff we are committed to improving the lives of children, young people and adults with DDH (Hip Dysplasia). This event is an opportunity to bring together our key stakeholders and find out what they want so we can then use our research to influence positive change with the Government and health service policy.”
Natalie Trice, Founder of Spica Warrior, the UK’s only dedicated DDH charity, commented, “I am delighted to be an expert speaker at this much needed event. My sister, two cousins and son have DDH so I know only too well the effects it can have on the patient and wider family. We believe increased awareness of DDH can help with early diagnosis and prevent lives being blighted by arthritis, immobility and hip replacements. We are looking forward to working with Hip Pain Cardiff to drive forward change and reform and see this event as the first step in that process.”
“It is disheartening that we get still get so many adults referred to us for surgery when with one screening test this condition could almost disappear”, further addedJohn O’Hara Consultant Surgeon Royal Orthopaedic Hospital Birmingham
A new study of people who have undergone surgery finds many spent years trying other treatments without success. But experts say operative treatment would have saved them years of pain and stress
Health experts are concerned that people with serious back, knee and hip conditions are using surgery as a last resort after years of pain, stress and even depression, despite the fact that simple surgical procedures performed early, could save them from many complications.
That’s following a study which questioned people who have undergone knee, hip and back operations and found that one average patients wait four years before opting to have surgery, trying more than seven alternative routes and treatments before seeing a surgical specialist.
This surgical procrastination means patients are enduring years of pain and risking the problem worsening, with patients who wait years before being operated on, more likely to face complicated procedures.
Before having surgery, close to three quarters tried to treat or cure the problem with pain killers, more than half physiotherapy, almost one in five self-help strategies, one in seven acupuncture and one in 10 chiropractors.
But during this time more than three quarters could only perform limited daily activities, almost 60% had disrupted and poor quality of sleep, close to 40% had restricted ability to fulfil family duties, more than a third were reliant on other people, more than a quarter were unable to work at all, one in five were unable to work to full capacity, and one in eight had to reduce hours. The study showed that women are far more likely to be able to continue with their daily routines compared to men.
Furthermore, more than three quarters said they felt frustrated, just under 60% depressed, a similar number stressed and 40% resigned to living with pain.
Almost a third says they felt like a burden a similar number negative and pessimistic, and a quarter confused about their long term health.
The impact of this also has a significant impact on the economy too; the exchequer suggests that back pain alone account for £5 billion per year in lost earnings and the TUC estimates that 4.9 million days are lost.
Following surgery more than 40% say they have regained their freedom, a third feel more independent, a fifth now feel they can make long term plans again and more than one in ten are more focussed at work.
When asked how they would approach their condition if given the chance again, more than a quarter surveyed by BMI Healthcare say they wouldn’t have waited so long for surgery, a similar number would have been proactive to seek out consultative advice earlier and one in five would have sought more information about the surgery options available.
So how many people could be suffering unnecessarily and what are the risks of putting off surgery?
To find out PatientTalk.Org’s Teekshana Smith interviewed Marnin Romm of BMI.
ROOM: My name is Marnin Room and I’m a senior specialist pain management physiotherapist.
SMITH: So a study of people who have undergone surgery has found that most spend years trying out alternative treatments without success and then they end up with years of pain and stress when they could have actually stopped it and nipped it in the bud. So what are main concerns patients have about surgery, particularly this kind of surgery?
ROOM: I think with general surgery it’s a fear factor, going under the knife, getting an anaesthetic, worrying that they’re not going to wake up, perhaps having more pain after the surgery or the pain is still not going to go away so there’s a big fear factor around surgery, I guess that’s the main thing.
SMITH: To what extent are they justified?
ROOM: There is a proportion of people who will have surgery and the pain has not gone away, their pain might even be worse. In addition their original pain might have gone away but there’s a different type of pain because the surgery causes soft tissue damage. You’re cutting through muscle and you are bound to have a different type of pain. The recovery is often long and tedious and hard, the rehabilitation is hard afterwards, so there is some justification underlying it I guess.
SMITH: Basically you found that patients were failing to seek advice from healthcare professionals. Why do you think they are often failing to do so?
ROOM: I do think that if you’re living with long term pain, after a while you’re scared of being judged and people think you’re making it up and you have probably gone from one clinician to a clinician and been referred to someone else, someone else and nothing comes of it. So you almost become quite despondent and getting further advice almost pushes the patient more into that vicious cycle and that pain centred life.
SMITH: Alternative therapy routes, if it’s not that effective, should there be a point where the professionals that you’re seeing, professional therapists, suggest a more traditional approach to surgery? Should it be on them or should you be the one researching it yourself?
ROOM: I definitely think that if you are seeing a professional, and I just want to correct the term “alternative treatment”, I’d rather say conservative management. So for example if you’re seeing a physiotherapist or you’re going to someone for acupuncture or you’re seeing an osteopath, if your physio or osteopath or whoever feels that things aren’t progressing or there’s been no change whatsoever or things are getting worse, it’s definitely their job to refer elsewhere and suggest well perhaps you should consider this type of surgery. I don’t think it’s an individual’s job to have to research these things, I think people need to be educated.
SMITH: What sort of conditions lead to these kind of surgeries?
ROOM: OK so patients for example who have lower back pain can often have a herniated or slipped disc as it’s known and what can happen with that is patients can have a neurological fall out. So for example, if it’s the lower back, people can have lower limb symptoms like weakness, unable to stand, unable to walk, balance problems, numbness, pins and needles, extreme pain down the legs and in those cases often patients’ functional abilities, so walking, so to stand, daily life is completely affected. In those situations perhaps surgery is a route to follow.
SMITH: What is the typical experience of a patient who is undergoing these procedures?
ROOM: Well it’s as we said, it’s quite scary undergoing back surgery for example or undergoing any joint type of surgery, there is a big fear factor around it but generally for example knee replacement surgeries are very effective and patients rehabilitate quite well afterwards. There is a big amount of rehabilitation following surgery, they have to go back to physios, back to strengthening the joints, the areas, getting the mobility back. So it doesn’t end with surgery, so there’s a lot of rehabilitation following that and it’s important that patients understand that.
SMITH: However, if you ignored the surgery and left the condition to get further damaged as such, what could be the issue with the deterioration that happens?
ROOM: Again that depends on the condition as well. Each person needs to be looked at individually. So I think it is very important that if someone is suffering from chronic or long lasting pain, that they go to pain management clinics to manage their pain so that they get back on top of their life. Often patients’ quality of life is significantly affected and we know that through good pain management programmes, patients can start self-managing their pain. That’s not saying that their pain is going to go away, but they can gain a quality of life back. If that doesn’t happen, if it still spirals out of control and you get this vicious cycle between increases of pain, reduced activity, emotional instability and so the cycle repeats itself.
SMITH: As I mentioned you’ve done a study of people, so why have BMI commissioned this research?
ROOM: Well a large proportion of the population or a large sample of people who come to BMI suffer from some sort of orthopaedic pain or neurological pain and it was important to investigate people’s quality of life before surgical intervention, how they reported that in comparison to post intervention. So for example before intervention, people did report a poor quality of life, however post intervention in the majority of cases patients’ quality of life improved significantly.
SMITH: If you had one piece of advice for somebody suffering from back pain, what would it be?
ROOM: One piece of advice? I definitely feel patients or people should not be despondent and let the back pain get on top of you, seek professional help, go for different types of information. Try to manage one’s pain instead of the pain managing you. So not to lie in bed all day, we know that is not useful with chronic lower back pain, it makes things worse. Try to move around in its limits.
SMITH: Fantastic and where can people go for more information?
ROOM: GPs are a very good first port of call and gain further insight through the GPs with relation to physios, consultants, go online, check out the different sites. So the information is out there, but seek the right information.