DDH UK AND THEIR PARAPLYMLIC SWIMMER PATRON FEAR A SLIPPERY SLOPE IS AHEAD FOR HIP PATIENTS

Paralympian Swimmers
Paralympian Swimmers

DDH UK, the only charity in the UK dedicated to supporting families dealing with hip dysplasia, are gravely concerned about plans by the NHS to only refer patients for hip surgery if their pain is so severe it interferes with daily life or the ability to sleep.

In a cost cutting bid to save £2million a year, it is claimed that health trusts are already tightening up their rules in a bid to slash operations by a fifth with others also looking to use a scoring system to rank patients’ pain for both hip and knee operations.

The charity is supporting more and more patients, from teenagers to those in their later years, who are facing hip replacements, often due to the effects of having hip dysplasia (DDH). DDH occurs when the hip joint fails to develop correctly and 2 to 3 in every 1,000 infants will require treatment* and whilst not life threatening, it can lead to pain, disability and the need for hip replacements.

Gemma Almond, DDH UK Patron and Paralympic swimmer who has bilateral DDH, said, “I find the new potential NHS rules worrying. Whilst in discussions with my consultants we have weighed up the level of pain for THR, it is the principle that underlie these new rules that is concerning. Pain is a subjective measure and decisions should be based on consultant / patient discussions about quality of life not funding.  The decision is hard enough to make, without the need to justify it in monetary terms. As someone who will need two THR in the next few years, I fear this could be a slippery slope and a worry for the future.”

Natalie Trice, DDH UK Founder, added, “We are speaking to more and more people who are in constant pain due to hip issues, and are saddened to read about plans that could mean they have to wait even longer for the surgery they need to improve their lives and mobility. My seven-year-old son has DDH and to date has had five operations and we simply don’t know what the future holds and this news is really frightening for us because a hip replacement isn’t out of the question in the future and we don’t want him, and others, to endure years of pain unnecessarily.”

Natalie added, “We understand that cuts do need to be made in the NHS but we would ask trusts to consider not only pain levels but also the quality of life of patients and their every day mobility and independence when putting these criteria together.”

 

For more information go to www.ddh-uk.org,

Hip Pain Cardiff. We are building a community of patients, their carers, surgeons, physiotherapists, academic researchers and more. Please join us!

Cast Life – A Parent’s Guide to DDH Natalie Trice
Cast Life – A Parent’s Guide to DDH Natalie Trice

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 added John O’Hara Consultant Surgeon Royal Orthopaedic Hospital Birmingham

 For more details about the event, details about attendance funding and to book tickets go to http://www.hippaincardiff.com

Cast Life – A Parent’s Guide to DDH – a post from Natalie Trice

Cast Life – A Parent’s Guide to DDH was launched in October and I hope it will offer a vital lifeline to parents with children suffering from Developmental Dysplasia of the Hip (DDH).

Cast Life – A Parent’s Guide to DDH Natalie Trice
Cast Life – A Parent’s Guide to DDH Natalie Trice

DDH occurs when the ball and socket of the hip joint do not fit snugly together and whilst it affects between one and three children in every thousand, information and support is shockingly poor leaving parents feeling confused about what happens next.

Inspired by her son who was diagnosed at four months, the author, Natalie Trice, knows all too well that whilst DDH is not life threatening, it certainly is life changing.

Natalie passionately believes that there needs to be more awareness of DDH, which if left untreated, can lead to long term disability, hip replacements and life long pain.

Cast Life is a comprehensive book that covers everything from easy to understand explanations about the condition and the treatments involved to the products available to make life easier for children in casts. It also looks at family life, dealing with emotions as well including first person stories and parent comments.

Professor N. M. P. Clarke ChM, DM, FRCS Consultant Orthopaedic Surgeon, who wrote the foreword for Cast Life, commented, ““DDH is one of the most common congenital abnormalities and it is remarkable that there is so little information out there. This book is essential reading for the parents of children with the condition, as well as health professionals working with them, and I would love to see it in all clinics around the world.”


Natalie added, “When a child is diagnosed with any illness, the parents often feel overwhelmed and want know as much about the condition as possible. When Lucas was diagnosed with DDH I was terrified and my initial search for information threw up horrific images and worst-case scenarios that simply compounded my fear.

“With Lucas facing more surgery this autumn, I am really pleased to have done something to help others as I know how hard the waiting and recovery periods are. Cast Life isn’t loaded with medical jargon, but it gives the reader the knowledge and facts they need to get to grips with DDH so they regain a little bit of control and power in what can be a tough situation.”

Cast Life is available on Amazon in the UK and US and Natalie has also set up Spica Warrior  a charity offering information about DDH, 10% of the royalties will be going to this cause, and blogs about the condition at Just because I love

Cast Life can be purchased here.