Midlands’ specialist urges NHS uptake of new treatment after patient “eats again”

An innovative treatment from a Midlands’ specialist has transformed the life of a retired teacher, helping her to eat again after a brain injury left her unable to swallow.

Dysphagia Specialist, Speech and language therapist Sumathi Sinnappan says the treatment, called Vital Stim therapy could also offer a breakthrough for up to 1.6 million people who have problems swallowing, as well as making huge savings in care costs.

The technique treats a loss of swallowing function, called dysphagia, which is common in brain conditions including stroke, Parkinson’s disease, Alzheimer’s, cerebral palsy and brain injury. It uses small electrical pulses to stimulate the swallowing muscles, retraining them to swallow.

The treatment is not currently available to NHS patients but has been provided as a standard treatment for the condition in the US for more than 10 years.

Mrs Sinnappan, who is an approved provider for Vital Stim therapy in the UK, is now calling for it to be studied further so it can be provided under the NHS.

Her campaign is backed by the NHS doctor involved in the treatment of the first UK Vital Stim therapy patient, who said her recovery after treatment had been “remarkable”.

Bob Rafal, consultant neurologist for the North Wales brain injury service called for the treatment to be provided where other remedies had failed while further studies were carried out into its effectiveness.

Glenys Watkins, 64, who lives near Rhyl, in North Wales, is the first patient to be treated with Vital Stim therapy in the UK. She said that as a result of the treatment had “got her life back again” as she can now eat and drink independently, instead of being fed through a tube.

Glenys’ condition was transformed after just two weeks of Vital Stim therapy treatment, which followed 11 and a halve months of conventional care.

The former history and special needs teacher, who faced being fed through a tube for the rest of her life, is now able to enjoy her favourite foods like spaghetti Bolognese and chips as well as cake and biscuits after regaining her ability to swallow.

“It’s transformed my life, even saved my life,” said Glenys.

“It’s brought my life back again, I feel normal again, I don’t go out a lot but now I can go out for a meal, eat and drink in company, and it’s made family life so much better.”

The married mother-of-one suffered a severe brain injury after falling down the stairs at her home in Dyserth, Denbighshire, in September 2006. She underwent a life-saving operation, which was followed by three weeks in intensive care and a further six weeks on a ward at the Walton centre for neurology and neurosurgery in Liverpool.

She was unconscious for a week following the accident and medics fitted a tube through her nose to her stomach to feed her with liquidized food.

After being discharged from hospital she spent six months at the St Asaph stroke rehabilitation centre in North Wales, before returning home in June last year, but she still could not swallow. Doctors had advised that she be fitted with a tube in her abdomen to transfer food directly to her stomach, a percutaneous endoscopic gastrostomy or PEG.

She began Vital Stim treatment in August 2007. After just 17 one-hour sessions, given over ten days, she was able to to eat and drink normally and began to respond more positively to her physiotherapy treatment.

Vital Stim therapy is a form of neuro-muscular electrical stimulus, where small electronic pads are placed on the skin which passes a small current that gently stimulates the muscles to retrain them to swallow again.

The same form of treatment is commonly used in physiotherapy to repair damaged muscles in other parts of the body, Vital Stim therapy is an innovative treatment because it the first time it applies this technique to the swallowing muscles to regain a patient’s swallowing function.

Sumathi Sinnappan, who lives in Wildwood, Stafford, was the first speech and language therapist to provide Vital Stim therapy in the UK, after becoming an approved provider of the treatment, and can support other therapists to provide the treatment. She works as a private speech and language therapy consultant for Ramsay Health Care in Rowley Hall Hospital.

“Glenys hadn’t been able to swallow for more than 11 months and after 10 days of treatment using Vital Stim therapy she was able to eat and drink normally. She’s really got her life back,” she said.

“Glenys, like lots of people with dysphagia, had a very poor quality of life, she was poorly motivated and depression can set in, which can mean a slow decline and the condition can become life limiting.

“This treatment could be a life-saver for more than a million people suffering with swallowing problems caused by a wide range of brain injury or brain disease.

“It will save on costs of treatment for patients with dysphagia, in cutting the operating cost of fitting a feeding tube to patients, of providing the liquidized food for them and many patients are in nursing home care because of their lack in independence, so there could be a vast cost saving,” she said.

“I’d like the NHS to take up the treatment or study it further, the same sort of treatment is already used on other parts of the body by the physiotherapists.”

Consultant neurologist Bob Rafal, who is also professor of clinical neuroscience and neuropsychology at Bangor University, said: “Mrs Watkins’ degree of recovery has been remarkable; I never expected to see the degree of dramatic recovery, and recovery to her independence and mental alertness, which she has got today.

“The published research suggests that this is a promising treatment and my experience in this one patient reinforces that view. As a consultant I would want Vital Stim therapy to be a treatment for patients with problems with swallowing due to a neurological difficulty, where other treatments had failed.

“Further studies should be done to evaluate Vital Stim therapy’s usefulness and if they bear out its effectiveness over time and in medical practice it should be available on the NHS. I think individual health authorities should allow funding for its use on a case by case basis for patients where other treatments have failed,” he said.

For further details contact the hospital 01785223203, 01785238618: Ms Sinnappan For further details on Vital Stim visit www.vitalstim.co.uk or www.vitalstim.com  email

 vitalstimuk@btinternet.com

Number of patients effected –

The BMJ Best Practice website reports two sets of research estimating that dysphagia effects between 5-8% of the population aged over 50, 20m people in the UK, which equates to 1.6m, and up to 15% of the elderly, aged over 85.

Lindgren S, Janzon L., Prevalence of swallowing complaints and clinical findings among 50-79-year-old men and women in an urban population.

Bloem BR, Lagaay AM, van Beek W, Haan J, Roos RA, Wintzen AR.Prevalence of subjective dysphagia in community residents aged over 87.

Cost

The typical treatment for dysphagia is the fitting of a feeding tube through the abdomen into the stomach, percutaneous endoscopic gastrostomy (PEG), the estimated cost of treatment associated with this per patient is £22,000 a year

Callahan CM, Buchanan NN, and Stump TE. Healthcare costs associated with percutaneous endoscopic gastrostomy among older adults in a defined community. J Am Geriatr Soc 49: 1525-1529, 2001.

Speech problems

Speech sound problems can be very mild, where one or two sounds are affected or they can be extremely severe, so that the child is virtually unintelligible.


Some times its so hard to tell what a child is trying to say because the speech sound system is so different to 'normal'. However, it is possible to identify the processes which are going on in order to work out a programme of therapy. Sometimes more than one process affects a speech sound. Small Talk Speech & Language Therapy can assess and treat even the severest of problems. We also do a training course to identify these processes, show how sounds are made and to look at how to encourage correct placement/production. We get good feedback from parents, teachers and others who attend. They all say we need to know more about how we all make our everyday speech sounds and what can go wrong, so I thought it might be useful to look at some of these processes briefly here.

• Fronting: This is where the  child uses the front of his mouth instead of the rear so that he might say 'tea' instead of 'key' or 'tar' for 'car'
• Backing: This is the reverse of fronting and the most common  process seen in dummy users. 'Take' would become 'kake' and 'date' would be 'gake'
• Stopping: This is where long sounds such as s, sh, z, f and v (fricatives) are shortened to a single 'stop' sound so 's' might be 'd', 'v' becomes 'b', and 'f ' may become 'p' or even 'd'.
• Weak syllable deletion: where the child reduces words of more than 1 syllable e.g. 'skit' for 'biscuit', 'copter' for 'helicopter'.
• Cluster reduction: where combined sounds are reduced e.g. 'bl' becomes 'r' or 'spl' becomes 'l'
• Consonant deletion: This is where a child just misses off sounds usually at the ends of words but also at the beginning e.g. 'ob' for 'Bob', 'ar' for 'car'.
• There are also other very immature processes which are entirely normal in very young children which might persist e.g. consonant harmony  where one consonant influences another e.g.  'coke' for 'coat' or reduplication 'mumu' for 'milk' .

Usually children with speech difficulties have more than one process affecting their speech at a time which can make understanding them very difficult. Therapists will work on the processes rather than the production initially.

If you want more detail about phonological processes, there's a really good article http://www.speech-therapy-information-and-resources.com/phonological-processes.html

If you are concerned about your child's speech please visit www.private-speech-therapy.co.uk

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Smart Talker short listed for another business award!!

The shortlist for the prestigious mumandworking 2010 Awards have just been announced - and guess what? I've been shortlisted! Yippee!

The 2010 mumandworking awards are organised by website  www.mumandworking.co.uk and reward and recognise the companies and individuals that make flexible working possible.  The aim is to show that family-friendly employment not only supports family life but gives real benefits to the companies involved.

The awards are  supported by Sarah Beeny, TV presenter, author, entrepreneur and Mum, who says, "Promoting flexible working is important so families have essential time together.  I'm delighted the mumandworking 2010 awards are going all out to praise the businesses and people who are making this possible for parents across the UK.  I encourage you to get involved and to lead the way in what is the biggest revolution in employment in recent years.  I'm very proud that I can support this programme and the mumandworking website."

There are 6 awards categories to recognise working parents, flexible employers and parents in business.

Over 400 nominations in total were made this year and I've been  shortlisted in the Business Parent of the Year Category.

Our independent speech and language therapy practice covers Staffordshire and our Smart Talkers pre-school communication groups are beginning to be franchised in other parts of the country. I was delighted to be nominated in the first place but to be shortlisted is fantastic! Being a single parent and having a business is always hard and something like this makes all the effort and juggling worthwhile.

The judges, including multi-award winning business woman Wendy Shand of Tots To Travel, are now reviewing all shortlisted entries and the finalists will be announced at the end of September.

All finalists will be invited to the stunning Hilton St Anne's Manor near Bracknell for a very special champagne awards ceremony on 4th November that will be attended by Sarah Beeny.  The winners will walk away with a selection of indulgent prizes worth over £3000 in total.

 
 
  
 Please vote for me at the mum and working site

If you click on the link and then like by my name Libby Hill Small Talkhttp://www.mumandworking.co.uk/awards/businessparent/

Thank you so much!

Signing as part of good practise

The 3 Horn End Nurseries at Stafford, Hixon and Rugeley enlisted our services again to devise a specialist signing programme. Suzie Bancroft Nursery Manager says “Our view is that communication is fundamental to early learning and confidence”.  This training has helped staff to assess and improve their own skills when developing children’s speech and language. The programme also ensures the staff introduce signing as necessary in a developmentally appropriate, functional way.

At Horn End, they promote the use of sign language with all children as part of providing a language and literacy rich environment, filled with words, and books, to develop children’s new ideas and growing minds. 

In the Baby Smalls group I helped the staff identify which signs were important to add to comments or instructions that the staff were giving to the babies which helps their understanding and ability to express themselves before they can talk, as well as singing and signing. The pre-school group Toby Talls have had a specially devised programme to encourage their vocabulary and general language skills as they learned important signs while the Tommy Thumbs enjoyed singing and stories with sign. It was fantastic fun but the staff and children learned so much.

One of the outcomes of this project is the development of the communication policy in the nurseries to include daily signing with the children as this promotes their understanding, expressive language and speech development from a very early age.

I'm producing a rhyme and sign CD with favourites from the Horn End nurseries including traditional songs and some devised specifically for the purpose.

If you would like to know more about this then please call Suzie on 01785 609699 www.hornend.co.uk   or Libby on 0844 704 5888 www.smalltalk-ltd.co.uk

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Prader-Willi Syndrome (PWS)

Prader-Willi? What's that, I hear some of you ask. In fact, I'll be surprised if many of you know what it is and even fewer will have met someone with this diagnosis. Prader-Willi Syndrome is quite rare, indeed estimates are usually around 1 in 125,000. However, Small Talk Speech and Language Therapy know 3 young boys who have the condition.  Each one of the three is very different but all have delayed receptive and expressive language and two have delayed phonological processes.

Prader-Willi Syndrome (PWS) affects both girls and boys and is present in all races. It is characterised by extreme floppiness at birth caused by low muscle tone. This weakness is usually so severe that tube-feeding is necessary at birth, and up to several weeks afterwards, in many cases. Poor sucking ability and a need to sleep more than typical babies mean they often show little interest in food, and there is a subsequent failure to thrive in the early months of life, which can sometimes continue to the toddler stage and beyond.  This must be very stressful for the parents, it's bad enough for first time mums and dads anyway without the added pressures of trying to get their baby to feed. 


After toddler hood they tend to enter a second phase with different characteristics. At this point their interest in food and appetite increases, and over-eating may result. This, combined with the poor muscle tone, can cause severe and life-threatening obesity unless its carefully managed. This seems to be true for all children with PWS and I can't find any record of exceptions to this. Individual needs vary from person to person with regard to energy intake, and calculations regarding daily calorie levels need to be made with a dietitian. 

If you think of all the opportunities and free availability of food these days, this must be a nightmare to manage. Parents often report that this is the worst problem because the child will do almost anything to get hold of food. To have to constantly refuse food to a child who is desperate to have it must be awful. One of the parents we know is excellent at looking for and identifying potentially difficult situations to avoid e.g. her son starts school in September and will have to walk past 50 lunch boxes on his way out of the classroom! I hadn't thought of that and neither had school. Another worrying feature is that they will then cram food into their mouths to get as much in as possible and any subsequent choking may be silent because of the poor muscle tone. Sometimes, especially if they have a learning disability, they will seek non-food items, like John I worked with in the 1990s who loved to find and eat soap (thank goodness for pump action dispensers now!).


There is a possibility of varying degrees of learning disability and immature emotional and social abilities which may become apparent.


I've written about it today because its yet another condition which affects spoken language ability and the parents have a huge additional demand to cope. At the end of week 3 of the summer holidays and we're fed up of our children? Think about how much harder it would be if they had PWS... bet you're counting your blessings now!!


I've found a lovely blog http://mylittleson.blogspot.com/ about a little boy with PWS from his parents point of view.

http://www.praderwillisyndrome.org.uk/

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RCSLT Giving Voice: Key message 4

Key Message Four

'Urgent changes are needed to support timely access to speech and language therapy for those who need it.'

Mainstream services must support the early identification of speech, language and communication difficulties, and ensure timely access to specialist services that are sustained in proportion to need.

With more coherent planning and sharing of resources across traditional boundaries like health, social care and education, speech and language therapists will be able to organise seamless programmes of care for people who need support with their communication and swallowing. Health and social care trusts, acute trusts, local authorities, schools and probation services must work more closely together to provide access to speech and language therapy, regardless of when and where people seek support.

Responsible agencies must maintain better data on the speech and language and communication needs of their populations. Services should be planned in line with these needs and structured in response to the emerging and established evidence and guidance on what works best.

A simple brain scan to detect ASD?

Have a look at http://autisminnb.blogspot.com/  who today report................:

Scientists funded by the Medical Research Council (MRC) have  developed  a pioneering new method of diagnosing autism in adults. For the first time, a quick brain scan that takes just 15 minutes can identify adults with autism with over 90% accuracy. The method could lead to the screening for autism spectrum disorders in children in the future.

In the MRC-funded study, scientists at the Institute of Psychiatry (IoP), King’s College London, used an MRI scanner to take pictures of the brain’s grey matter. A separate imaging technique was then used to reconstruct these scans into 3D images that a computer algorithm can assess for structure, shape and thickness – all intricate measurements that reveal Autism Spectrum Disorder (ASD) at its root. Having developed this process, the computer can quickly pinpoint biological markers, rather than personality traits, to assess whether or not a person has ASD.

ASD is a lifelong and disabling condition caused by abnormalities in brain development. It affects about 1% of the UK population (over half a million people), the majority of these being men (4:1 male to female). Until now, diagnosis has mainly relied on personal accounts from friends or relatives close to the patient – a long and drawn-out process hinged on the reliability of this account and requiring a team of experts to interpret the information.

Dr Christine Ecker, a Lecturer in the Department of Forensic and Neurodevelopmental Sciences from the IoP, who carried out the study said:

“The value of this rapid and accurate tool to diagnose ASD is immense. It could help to alleviate the need for the emotional, time consuming and expensive diagnosis process which ASD patients and families currently have to endure. We now look forward to testing if our methods can also help children.”

Professor Declan Murphy, Professor of Psychiatry and Brain Maturation at the IoP, who led the research said:

“We think that our new method will help people with ASD to be diagnosed more quickly and cost effectively. Most importantly their diagnosis will be based on an objective ‘biomarker’ and not simply on the opinion of a clinician which is formed after an interview. Simply being diagnosed means patients can take the next steps to get help and improve their quality of life. People with autism are affected in different ways; some can lead relatively independent lives while others need specialist support or are so severely affected they cannot communicate their feelings and frustrations at all. Clearly the ethical implications of scanning people who may not suspect they have autism needs to be handled carefully and sensitively as this technique becomes part of clinical practice.”

Professor Christopher Kennard, Chair of the MRC’s Neuroscience and Mental Health funding board said:

“Bringing together the knowledge gained from neuroscience in the laboratory and careful clinical and neuropsychological evaluation in the clinic has been key to the success of this new diagnostic tool. In fact, this approach to research is a crucial theme throughout the MRC’s strategy. We know that an investment like this can dramatically affect the quality of life for patients and their families. The more we understand about the biological basis of autism, the better equipped we will be to find new ways of treating those affected in the future.”

The research studied 20 healthy adults, 20 adults with ASD, and 19 adults with ADHD. All participants were males aged between 20 and 68 years. After first being diagnosed by traditional methods (an IQ test, psychiatric interview, physical examination and blood test), scientists used the newly-developed brain scanning technique as a comparison. The brain scan was highly effective in identifying individuals with autism and may therefore provide a rapid diagnostic instrument, using biological signposts, to detect autism in the future.

The research was undertaken using the A.I.M.S. Consortium (Autism Imaging Multicentre Study), which is funded by the MRC. Support funding was also provided by the Wellcome Trust and National Institute for Health Research.

The paper, ‘Describing The Brain In Autism In Five Dimensions - MRI-Assisted Diagnosis Using A Multi-Parameter Classification Approach’ is published in the Journal of Neuroscience on Wednesday 11 August.

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