Long term conditions

What role does children's physiotherapy play in long term conditions?

Physiotherapy management will vary based on the individual child's needs. The aim is usually to help maximise an individuals function, participation and independence. This is often through advice, equipment and a tailored home exercise program.

We aim to offer advice and support to the child, parents/carers and nursery/school staff. Children are usually seen in clinic settings but can be seen at home and nursery/school when needed.

Cerebral Palsy

Cerebral Palsy (CP) is a physical disability that effects movement and posture. It is the most common disability in childhood with 17 million people having it worldwide.

It occurs as a result of an injury to the brain while it is developing, anytime from before birth right up to age 5. When the brain is damaged, the messages it sends to different parts of the body get jumbled up or lost. This can affect movement, learning, speaking and every part of the way the body works. The brain injury does not get worse, but the effects may increase with age as children grow.

CP affects every individual differently. It also ranges in severity from very mild to severe.

CP can be classified in different ways or types:

By parts of the body affected

Hemiplegia - Half of the body affected (either the right arm and leg or the left arm and leg)

Diplegia - Predominantly both legs affected

Quadriplegia - All 4 limbs affected

By movement ability - GMFCS Level

The Gross Motor Function Classification System (GMFCS) is a 5-level classification system that describes the movement ability of children and youth with cerebral palsy, with particular emphasis on sitting, walking, and wheeled mobility.
Distinctions between levels are based on ability and the need for aids such as sticks, walkers, or wheelchairs.

Here is a very brief overview:

• Level I : Can walk without limitations
• Level II : Can walk with limitations
• Level III : Can walk using a hand-held mobility device
• Level IV : Has self-mobility with limitations; may use powered mobility
• Level V : Is transported in a manual wheelchair

Please talk to your consultant or your physio if you want to know which level your child is

By how it affects the muscles

Spastic - Most common affecting between 80 and 90% of children with CP. Spasticity or increased muscle tone caused muscles to feel tight and stiff and can limit the amount of movement at a joint.

Dyskinetic (Sometimes called dystonic, athetoid or choreoathetoid cerebral palsy) - This affects about 6% of children with CP and is characterised by uncontrolled, involuntary, movements. This movements can be brief or sustained.

Ataxic - Affects approximately 5% of children with CP. Its characterised by shaky movements and affecting balance. It affects the sense of positioning in space which can make it difficult to their judge body position in relation to things around them.

Mixed - Some people will have a mix of types for example spasticity and dyskinetic.

Associated impairments

CP has many associated impairments
Walking
Talking
Intellectual impairment
Behaviour
Epilepsy
Vision Impairment
Bladder control
Sleep
Saliva control
Pain

It can impact every daily activity
2/3 of children with CP have at least 1 arm affected. This can impact on eating, dressing, writing, catching a ball.

Symptoms of cerebral palsy

Symptoms of cerebral palsy normally become noticeable around 18 months to 2 years old. Although sometimes diagnosis is later in childhood. Your child might have problems with movement, co-ordination and development.

Possible signs of CP can include:

• delays in reaching development milestones
• being very stiff or very floppy
• fidgety, jerky or clumsy movements
• muscle spasms
• walking on tiptoes
• early hand preference
• hand fisting

Symptoms will vary depending on the severity and type of cerebral palsy.

If you have concerns about your child please see our Getting more help page

More information

Other management of CP

Please click the link if you wish to read more detailed guidance published by NICE (National Institute for Health and Care Excellence) on the management of children with CP:

• NICE Cerebral palsy in under 25s: assessment and management
• NICE Spasticity in under 19s: management

SDR surgery

The aim of selective dorsal rhizotomy (SDR) is to ease muscle spasticity and improve mobility in people with cerebral palsy. It involves cutting nerves in the lower spine that are responsible for muscle rigidity.

It is only available on the NHS to a small cohort of children with CP that meet specific criteria where it has been shown to be most effective. Some parents choose to go ahead with the surgery privately. To be assessed, a paediatrician would need to refer your child to a specialist centre.

Here is some more information:

• APCP Parent advice leaflet on SDR
• NICE Selective dorsal rhizotomy for spasticity in cerebral palsy

Great charities and support pages for CP

Shropshire CP Society - A grant making charity for people with CP in Shropshire, Telford & Wrekin
CP Teens UK - Provides help, hope, inspiration & friendship for young people with physical disabilities
CP Sport - Provides sport and activity opportunities for people with cerebral palsy
World CP Day - Brings together people living with cerebral palsy, their families, allies, supporters and organisations across more than 100 countries
Canchild - Research focusing on improving the lives of children with a variety of developmental conditions and their families
Scope.org.uk - Provide practical advice and emotional support whenever people need them most.
Mencap - For people with learning disabilities and their families
Contact - To support and bring together families with disabled children

Or take a look at our Getting more help page for a full list or useful charities and support groups

Down Syndrome

Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. Down’s syndrome usually occurs because of a chance happening at the time of conception.

Around one in every 1000 babies born in the UK will have Down’s syndrome. There are approximately 47,000 people in the UK with the condition.

People with Down’s syndrome are all unique individuals with their own personalities, family backgrounds and preferences that make them who they are. Like most of the population, people with Down’s syndrome learn at school, have interests, hobbies and talents, have friends and relationships.

People with the syndrome will have a learning disability. The learning disability affects a person’s ability to learn, it does not mean they cannot learn.

For more information please see the Downes Syndrome Leaflet

More information

Language creates reality

Language is important when talking about down syndrome.
For example, a baby does not suffer from Down syndrome, a baby has down syndrome.
Please see these cards by Language Creates Reality for more examples.

Great charities and support pages for DS

Down syndrome association - For people with Down's syndrome, their parents and carers.
Canchild - Research focusing on improving the lives of children with a variety of developmental conditions and their families
Scope.org.uk - Provide practical advice and emotional support whenever people need them most.
Mencap - For people with learning disabilities and their families
Contact - To support and bring together families with disabled children

Please see our Getting more help page for a full list of all charities and support groups

Duchenne Muscular Dystrophy

DMD is a genetic disease that causes muscle weakness and wasting. It is the most common and severe form of muscular dystrophy, with 2,500 people living with DMD in the UK, almost always affecting boys. DMD is a life-limiting condition, and most children usually require a wheelchair to mobilise by the age of 12.

It is caused by a fault, known as a mutation, on the dystrophin gene. Dystrophin is a protein that protects muscles; without it, muscles are easily damaged, and their strength and function is weakened. It eventually affects all the muscles in the body, including the heart and lungs.

Early signs of DMD

DMD is typically diagnosed in childhood between the age of three and six. In the early stages, boys with DMD show signs of muscle weakness, such as difficulties with:

• Running
• Jumping
• Climbing stairs
• Getting up from the floor - They can show a Gower’s manoeuvre meaning they need to support themselves with their hands on their thighs as they get up from the floor

If you have concerns about your child please see our Getting more help page

More information

The North Star Project

The North Star Project was set up in 2003 to help drive improvements in services and set national standards of care for children living with DMD. The overall aim is to optimise the care of young patients with DMD by agreeing on best clinical management, irrespective of where the child is treated.

The project includes:

• The North Star clinical network - The network consists of lead consultants, senior physiotherapists and other allied health professionals from 23 specialist paediatric tertiary centres (hospitals) across the UK. Over 600 ambulant children with DMD are registered with these centres.
• Assessment protocol - A standardised physiotherapy assessment protocol has been developed for ambulant (walking) children with DMD. Measures include assessment of functional abilities, muscle strength and pulmonary function.
• National database - Information from the clinical assessment protocols from participating centres is, with parental consent, entered into the North Star database. Collating information from many centres about the condition gives a larger body of information to assist clinical decision-making and service development.

For more information, please see the the NorthStar Program by supporters Muscular Dystrophy UK

Great charities and support pages for DMD

Duchenne UK - We connect scientists, the pharmaceutical industry, the NHS and families to advance and accelerate medical research, while bringing everyone affected by DMD the care and support they need. See our great information pack for those newly diagnosed.
Muscular dystrophy UK - Charity bringing individuals, families and professionals together to fight muscle-wasting conditions
Canchild - Research focusing on improving the lives of children with a variety of developmental conditions and their families
Scope.org.uk - Provide practical advice and emotional support whenever people need them most.
Contact - To support and bring together families with disabled children

Take a look at our Getting more help page for a full list of useful charities and support groups

Equipment

Equipment can be a large part of your child's physiotherapy management. Click the sub-headings below to expand more information.

Standing frames

There are many reasons why standing is important. For children who are unable or have reduced ability to stand or walk, a standing frame is recommended to help provide these benefits.

Please take a look at this leaflet from APCP which explains the benefits of standing frames.

Sleep systems

Sleep systems can help your child maintain a good posture whilst sleeping overnight.

We recommend sleep systems as part of a child's 24-hour postural management program if they are at risk of deteriorating muscle length and joint contractures.

Walking aids

We provide walking aids including walking sticks, rollators and posture walkers to support functioning walking.

We can also refer for specialist walking frame assessments at ORLAU at RJAH

What equipment do physio NOT manage?

Wheelchairs and buggies
Please see Shropshire Wheelchair and Posture Service (SWAPS)

Insoles
Please see Podiatry

AFO's ('splints') and orthotic footwear such as boots
P lease see Orthotics at RJAH phone number 01691 404442,
or call Orthotics at Royal Shrewsbury on 01743 261000 Ext: 3701,
or Orthotics at Princess Royal on 01952 641222 Ext: 4224

Contracture Correction Devices (CCDs) or any walkers/standing frames that are managed by ORLAU
Please see ORLAU at RJAH phone number 01691 404532

Home Adaptations
If you live in Shropshire contact First Point of Contact on 0345 678 9021 to refer your child to Local Authority Occupational Therapy
If you live in Telford contact Family Connect on 01952 385385 to refer your child to Local Authority Occupational Therapy

Car adaptations and Car seats
Have a look at the Regional Driving Assessment Centre and Driving Mobility websites for more information on their services

Concerned about a piece of equipment?

For home equipment such as hoisting, seating and bathing equipment please contact your local council Occupational Therapy team: Telford or Shropshire

For walking frames and standing frames contact your physiotherapist.

For wheelchairs: Shropshire Wheelchair and Posture Service

For orthotics

The 'F' Words in childhood disability

Click here to view the poster to see what might be important to your child

In 2011, Dr. Rosenbaum and Dr. Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six F-words that the authors state should be the focus in childhood disability - Functioning, Family, Fitness, Fun, Friends, and Future.

Frequently asked questions

Will my child always have a Physiotherapist?

Not necessarily. If your child's long term condition is stable with no current concerns then we may discharge your child for the current episode of care for you to continue with our physiotherapy advice.

However, if any concerns arise in the future your child can always be re-referred back to us via their GP or any health care professional. Please see our Getting more help page for more information.

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