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Issue Date:- 19 May 2008

Patients in the North West denied long term physiotherapy

PATIENTS with long term conditions are being denied ongoing physiotherapy by the NHS reveals a report published by the Muscular Dystrophy Campaign. 

The clinician and physiotherapist led report, Focus on Physio, found that for many adults and children with neuromuscular conditions, physiotherapy is essential in maintaining the best possible quality of life, for as long as possible.  However, physiotherapy is often restricted to patients where an improvement can be demonstrably measured by physiotherapists. Patients with progressive neuromuscular conditions fail to meet these criteria and are often refused physiotherapy on the NHS. They are then forced to pay for these services privately or go without.

On May 12, 100 families, clinicians and campaigners lobbied Parliament, and petitioned Number 10 Downing Street, to call on the Government to recognise the specialist nature of neuromuscular services and improve access to ongoing therapies as a matter of urgency. A number of families and healthcare professionals made the journey from the North West to Westminster for the lobby.

Following a Freedom of Information request and a survey of patients, Building on the Foundations: Focus on Physio, reveals:

· many patients with neuromuscular conditions do not receive continuous, specialist physiotherapy or any physiotherapy at all; 2 out of 3 PCTs fail to provide ongoing physiotherapy for patients where required;  [Example: One 45-year-old mother and her 23-year-old daughter from Lancashire both have FSH Muscular Dystrophy. Neither have ever been offered or seen by a physiotherapist on the NHS.]

· 1 in 5 NHS Trusts and PCTs fail to provide financial support for physiotherapists to attend training courses in neuromuscular conditions despite the NHS’s commitment to Continuing Professional Development (CPD);

· almost 2 out of 3 Trusts say they do not have any physiotherapists with specific training in neuromuscular conditions;  [Example: One patient from Stockport was seen by an NHS Physiotherapist with no specialist training and was sent home as there was nothing they could do to help. This same patient now receives ongoing fortnightly physiotherapy at the specialist Neuromuscular Centre in Winsford.]

· the situation is particularly difficult for young adults making the transition to adult services – their current physiotherapy is often immediately withdrawn as soon as they turn 16 - 18 years-old;

· specialist physiotherapy services are vulnerable where they rely on charitable sector funding.  [Example: Flintshire Local Health Board refuses to pay the physiotherapy of five patients referred to the Neuromuscular Centre in Winsford.

The Muscular Dystrophy Campaign’s report Focus on Physio is the second stage in the Building on the Foundations campaign, launched last December, calling for a specialist neuromuscular service across the UK.

Commenting on the report and travelling to Westminster today, Co-founder of the Neuromuscular Centre in Winsford, Kate Fox from Cheshire, said:- “NHS Physiotherapy that is available to individuals with a neuromuscular condition is still very much a postcode lottery. There is a shortage of community physiotherapists for both adults and children.  Unfortunately, neuromuscular diseases are rare conditions and many physiotherapists may not meet anyone with the conditions in their professional working life. This is why I’m Lobbying Westminster today to ensure that access to physiotherapy is at the top of the Government agenda.”

Co-author of the report Rosie Paver, Head of Physiotherapy at the Neuromuscular Centre in Winsford, commented on the importance of physiotherapy:- “It is vital that health and social services acknowledge the importance of access to regular and ongoing physiotherapy for patients affected by muscle disease.   We have been increasingly successful in obtaining funding from NHS Trusts for the patients we provide therapy to at our centre. This is a very positive step and recognises the real and lasting contribution we can make to the quality of life of patients with neuromuscular conditions.

I urge all NHS Trusts to recognise the importance of physiotherapy in the care of patients with muscle disease.”

Robert Meadowcroft, Director of Policy at the Muscular Dystrophy Campaign, said:- “It’s ludicrous to force patients with long term conditions to be re-referred by their GP again and again for ongoing physiotherapy. Parents are also rightly concerned about their children’s access to physiotherapy once they reach adulthood as it is often immediately withdrawn. 

We are calling on all regional Specialised Commissioning Groups to undertake a review of services in their region and we call on the Government to recognise neuromuscular services as being specialist.” 


NEW research reveals that far from looking forward to the break this May, parents in the North West are considering it a Bank Helliday, with 57% worrying about how to keep the children entertained and occupied over the long weekend; especially when it comes to long car journeys.

The research, commissioned by learndirect, the UK’s largest provider of numeracy and literacy skills and qualifications, surveyed parents with children aged up to 12, and found that braving the country’s roads and motorways with the children causes the most stress for 13% of parents.  Findings further reveal that 56% kids get bored in just 15 minutes if they have nothing to do. And with the RAC warning of unprecedented bank holiday congestion, cars and kids are a recipe for raised blood pressure amongst parents, warns learndirect.

When it comes to long car journeys, traditional car games continue to be one of the most popular ways to keep the kids occupied, with 70% of parents in the North West opting for the likes of I Spyor counting cows. A similar number of parents (72%) also bring books to keep their kids busy on long journeys. However, 59% are forking out for the latest games consoles and portable DVD players to keep their cherubs busy.

Celebrity parents Eamonn Holmes and Ruth Langsford know only too well the stress that long car journeys can cause. Says Ruth:- “Our young son gets very bored on long car journeys, so I need to plan ahead with ways to keep him entertained. This Bank Holiday, learndirect is encouraging parents to pick up their free copy of ‘Where Did The River Go?’ as a way of keeping your kids occupied. We love it because there are maths & English puzzles as well as a great story by famous children’s author Peter Corey. Our Jack calls it the magic book!’ 

Eamonn, who helped create the story book alongside Ruth, says:- “We worked closely with Peter on this book and some of the puzzles really made me question my own maths skills. It’s a good way to test yourself but it doesn’t take away from the enjoyment of reading with your kids – especially on long car journeys where everyone needs to be occupied – even us adults! And even if you’re not facing the roads, the story book is a great way of entertaining the kids at home this Bank Holiday.”

To help combat boredom and restlessness in the car, top Child Psychologist and author, Dr Richard Woolfson, has devised a simple way of calculating the number of distractions needed to keep your child happy whilst on the move:-

D =      L__
         A x E

According to Dr Woolfson, the Length of the journey (in minutes) divided by the Amount of time (in minutes) it takes before your child gets bored, multiplied by how Excited your child is about getting to the destination (on the scale 1 = exceedingly excited; 10 = not bothered) will determine how many Distractions are required for the journey.  But Dr Richard Woolfson warns:- “Although many parents rely on the latest gadgets to keep their kids occupied, watching a DVD or listening to music doesn’t benefit them intellectually when compared to playing real games, reading books or doing puzzles or quizzes. These types of activities will stimulate their brains and keep them engaged for longer.”

Visit the learndirect website to find out more on how to get your free copy of ‘Where Did The River Go?’. You can also find your nearest learndirect centre by logging onto or by calling the freephone number 0800 101 901.

Patients say Trust continues to improve

IN the latest inpatient survey, 80% of patients said the care they received was either very good or excellent, 80% said they were always treated with respect and dignity and 77% thought the doctors and nurses worked very well or excellently together. In each case this is an increase on last year.  Some of the areas where our score had improved significantly included questions about how they rated the food and whether they received help from staff to eat their meals, how much information they were provided with on discharge from hospital and whether they had to share accommodation and facilities.

The results from 2007 show that the Trust's scores have improved in 31 of the 55 questions asked last year. We have fewer questions than last year scored in the lowest 20%, a drop from 9 to 5. In the answer to five questions we scored within the top 20% and in all other questions we scored within the middle 60%.  This year there were 7 additional questions including whether the patient ever felt threatened by other patients or visitors and we were scored among the top 20% for that question. For the others we were within the middle 60%.

Liz Yates, Director of Nursing said:- "It is, of course, pleasing to see that overall patients are more impressed with their care than last year, but we are by no means complacent. We will be studying the report in some detail, particularly those areas where we are still in the lowest 20% or where we have scored less than last year to see what we can do to improve in those areas." 

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