Conditions

We provide the highest possible standards of care for clients with a range of different injuries and conditions, whilst ensuring their quality of life remains high and they can truly flourish in their daily lives.

Below is a comprehensive list of the wide range of varying injuries and conditions for which we can provide care.



Spinal cord injuries

Spinal cord injuries

A spinal cord injury (SCI) is damage or trauma to the spinal cord that results in a loss or impaired function causing reduced mobility or feeling. The effects of the SCI depends both on the type of injury and the level of the injury. SCI can be divided into two types of injury - complete and incomplete, both of which InVent Health can help with.

A complete injury means that there is no function below the level of the injury; no sensation and no voluntary movement. Both sides of the body are equally affected.

An incomplete injury means that there is some functioning below the primary level of the injury. A person with an incomplete injury may be able to move one limb more than another, may be able to feel parts of the body that cannot be moved, or may have more functioning on one side of the body than the other. With the advances in acute treatment of spinal cord injuries , incomplete injuries are becoming more common.

Cervical (neck) injuries usually result in quadriplegia and injuries above the C-4 level may require a ventilator for the person to breathe. Our InVent Health care team specialise in at-home ventilation care and can work with clients to access the best care package that meets their needs. This support includes long term ventilation as well as the planned decannulation of those on short term ventilation.

We have worked with people with spinal cord injuries for many years and are extremely experienced at caring for individuals who experience a wide variety of motor functioning and neurological changes.

Care needs are met whilst aiming to promote independence. We aim to ease the transition from hospital to home by introducing staff as soon as possible during a client’s hospital stay in order to build a close relationship that will continue after discharge.

We have highly trained staff who are competent with the use of specialised equipment such as ventilators ensuring the highest quality of care and service.

For further information, please call us on 01698 352 734

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Neuromuscular conditions

Neuromuscular conditions

Neuromuscular conditions affect nerve and muscle tissue. There are over 60 known forms of muscular dystrophy and related neuromuscular conditions. Deterioration of nerve tissue and muscle wastage cause progressive muscle weakness as the condition develops. The majority of neuromuscular conditions are inherited and so have a genetic basis.

Our clients presenting with neuromuscular conditions can develop respiratory problems and experience difficulty with breathing. They therefore require respiratory function and airway management. They may need oxygen therapy, and/or long term non-invasive or invasive mechanical ventilation. For long term invasive airway and ventilation, the client will have a tracheostomy in situ. They will require a team of carers who are fully competent in caring for someone with an artificial airway, and who are trained in the safe use and monitoring of the client and the specialist equipment used in the home.

Autonomic dysfunction could be a problem for some of our clients and our care team are taught to observe for symptoms of cardiac abnormalities, hypo/hypertension and urinary retention.

Nutrition and hydration management is very important. Swallowing and chewing difficulties due to facial muscle weakness and uncoordination can result in aspiration or silent aspiration. In addition to this, gastro-oesophageal reflux may also occur. This means that our clients often require long term management by tube feeding via NGT, PEG or JEJ.

Physical manifestations can prevent the client from being able to perform their own self-care routine. They may experience changes in bowel and bladder function. Our carers help the person with their care routines, promoting independence wherever possible, whilst ensuring that their privacy and dignity is maintained.

The client will also require effective and safe medicine management, in particular the correct pain relief and seizure management. At InVent Health, we are highly practised at administering this level of medication and our staff are trained to the highest standard so they recognise changes in our clients to enable timely and lifesaving reactions.

Psychological aspects and personal development issues are another important factor to consider when providing care to our clients. Some of our clients’ experience problems with vision, speech and hearing that can alter the way the person communicates. Promoting independence, providing appropriate stimulation and facilitating the individual to communicate their needs is also a vital aspect of the care provided.

Working with our clients to determine their exact care requirements while encouraging them to socialise and live as independent lives as possible is what we do best.

 

Congenital Central Hypoventilation Syndrome

Congenital Central Hypoventilation Syndrome

Congenital Central Hypoventilation Syndrome (CCHS) is a rare disorder of the autonomic nervous system, the part of the nervous system which is responsible for the control of involuntary muscles. In other words, anything which is not consciously directed such as heart beat, renal function, bowel function and breathing. Breathing is predominantly affected by CCHS which causes hypoventilation (slow and shallow breathing).

Symptoms of the condition may be present at birth in severe cases where babies do not breathe and need assisted ventilation in the delivery room. With less severe cases infants may present solely because of an observation by parents or health professionals that the infant appears to often stop breathing. So, symptoms may range from poor to complete lack of spontaneous breathing.
No medication has been shown to be effective in the treatment of CCHS so mechanical ventilation, usually via a tracheostomy, is commenced to ensure adequate ventilation. Some individuals may be able to self-ventilate during wakefulness but may require mechanical ventilation overnight to take over the control of breathing. Other more severely affected individuals may require ventilation 24hrs a day.

Whilst the condition and its treatment initially appear daunting, with the appropriate level of support, individuals and their families may live a fulfilling and productive life at home. With advances in home health care technology, such as portable ventilators and monitoring equipment, has come optimal health management and a much improved prognosis for children diagnosed with the condition. Children may attend school with their peers and make good progress with the appropriate balance between educational support and health care supervision. The key to longevity is through careful and thorough assessment of the individual needs and the implementation of a tailored ‘home care package’ provided to support and facilitate a fulfilling life at home and in other community settings.

Our team of nurses and health care support workers work with multidisciplinary teams, clients and their families to help plan and implement tailored home care packages to enable individuals and families to live fulfilling lives at home.

Care packages may include night time support to monitor and carry out care intervention as necessary, day time support to enable individuals to attend school and other community settings or simply a day or two respite each week to provide parents with a break. Each care package is individually assessed based on client and family needs and wishes and planned and implemented accordingly in conjunction with the multidisciplinary team.

Whatever the size of a care package, caring and competent staff are essential to its success and all of our staff are thoroughly trained in all of the necessary aspects of care. Training packages will be tailored according to individual need and for CCHS clients may include management and care of the artificial airway (tracheostomy), mechanical ventilation, nebuliser therapy, end tidal CO2 monitoring, O2 saturation monitoring and emergency intervention. All of our staff undergo thorough initial training and are continuously updated and assessed on both theoretical and practical components of care and nursing interventions. A good knowledge of the underlying condition is essential to underpin practical intervention and to ensure competent and safe care provision.

Psychological effects of both the condition and the impact of allowing a care team into the home environment are also vital considerations when planning and implementing a package of care. Promoting privacy, dignity, optimal development and independence are key to the work of our teams.

CHARGE

Charge

CHARGE syndrome is an extremely complex syndrome and occurs in about one in every nine to ten thousand births worldwide. The syndrome is a genetic condition which is often caused by a new change in the CHD7 gene on chromosome #8. Although it is a genetic condition, it is not usually passed on from parent to child and the risk of reoccurrence in another child with the condition is 1-2%.

CHARGE syndrome consists of a recognisable genetic pattern of birth defects, involving extensive medical and physical difficulties which can differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects including complex congenital heart defects and breathing problems. As a result, they may require long term tracheostomies, mechanical ventilation to aid breathing and long term artificial feeding tubes. CHARGE syndrome can also present some degree of learning disability and hearing impairment, but this is variable between individuals.

The name ‘CHARGE’ was developed in 1981 and is an acronym to describe a specific cluster of recognisable features seen in many children with CHARGE: C - Coloboma of the eye, H - Heart defects, A - Atresia of the choanae, R - Retardation of growth and/or development, G - Genital and/or urinary abnormalities and E - Ear abnormalities and deafness. Today, the CHARGE acronym is no longer used as a diagnostic tool. The diagnostic process for CHARGE syndrome involves identifying major/minor clinical features and genetic blood tests to determine a mutation in the CHD7 gene.

Huntington’s disease

Huntington's disease

Huntington’s disease is an inherited condition which is caused by a defect within a single gene, causing damage to certain nerve cells within the brain. Over time, the damage to the brain cells progressively gets worse causing movement, cognitive and psychiatric disorders, presenting with a wide variety of signs and symptoms. It usually develops in adulthood and can affect both men and women.

Huntington’s disease was previously known as Huntington’s Chorea. ‘Chorea’ is the Greek word for dancing, which suggests that the involuntary movements associated with the condition can look similar to jerky dancing. However, the condition consists of more than just abnormal movements and so the preferred term is Huntington’s disease.

After the onset of Huntington’s disease, a person’s functional abilities gradually deteriorate overtime.  The rate and progression of the disease can vary between each individual. Over time, people with the disease need personal care and assistance with certain activities in daily life. Sadly, there is no cure for Huntington’s disease and the rate of progression cannot be reversed or slowed down.

Canavan disease

Cananvan disease

Canavan disease is a rare, progressive and fatal neurological inherited disorder that damages the ability of the nerve cells within the brain to send and receive messages. This disease belongs to a genetic group of disorders called leukodystrophies. Leukodystrophies disturb the growth or maintenance of the myelin sheath. The myelin sheath is the protective layer which covers the nerves and promotes the efficient transmission of nerve impulses. Mutations in the ASPA gene cause Canavan disease and are inherited in an autosomal recessive pattern, meaning both copies of the ASPA gene in each cell have mutations.

The disorder usually becomes apparent in infancy between 3-9 months old, and by age 3 problems with development become noticeable. Symptoms of Canavan disease can vary, with a common feature being that motor skills such as turning over, controlling head movement, sitting with support, crawling or ability to walk are not developed. Other recognisable features of Canavan disease are muscle weakness, rapidly increasing head circumference, irritability, swallowing difficulties, seizures, deafness, blindness and sleep disturbances.

 

Parental nutrition

Parental nutrition

Parental nutrition (PN) is a type of nutrition formulae which contains nutrients such as glucose, amino acids, lipids, vitamins and dietary minerals. It is administered directly into the bloodstream via a large intravenous line which is inserted into a large vein. PN bypasses the normal digestion route through the stomach and bowel. PN is for people of all ages who are unable to meet their nutritional and/or hydration needs orally. This could be due to an impaired GI tract or disorders which require complete bowel rest, such as short gut syndrome. PN solutions vary depending on the person’s disorder and age.

It is essential that all staff, families and carers have the necessary knowledge and skills to provide safe, effective, person centred care. Therefore, multi professional teams provide support to ensure the safe and effective management of all aspects involved with PN.

Cerebral Palsy

Cerebral Palsy

Cerebral palsy is the general term used for a number of neurological conditions that affect the loss or impairment of motor functions. Cerebral palsy is caused by brain damage and affects specific areas of the brain which are responsible for controlling muscles. The condition can occur due to abnormal development of the brain or damage which has occurred before, during or immediately after birth. Specific factors which can cause cerebral palsy are an infection caught by the mother during pregnancy, premature birth, bleeding in the baby’s brain and mutations in the genes that affect the brain’s development. There are four specific types of cerebral palsy:

  • Spastic cerebral palsy
  • Dyskinetic cerebral palsy
  • Ataxic cerebral palsy
  • Mixed cerebral palsy

Symptoms of cerebral palsy include muscle stiffness/floppiness, muscle weakness, random/uncontrolled body movements and problems with balance and co-ordination. These symptoms vary between each individual, affecting different areas of the body. They can range from mild problems in an individual to an individual who is severely disabled. People with cerebral palsy may have associated problems or conditions including:

  • Epilepsy
  • Swallowing difficulties
  • Gastro-oesophageal reflux disease
  • Scoliosis
  • Urinary incontinence and constipation
  • Learning difficulties (usually intelligence is unaffected)
  • Speaking difficulties
  • Visual and hearing impairment

 

Learning disabilities

Learning disabilities

‘A learning disability is a reduced intellectual ability and difficulty with everyday activities’. (Mencap)

Learning disabilities can vary with each individual and can determine the level of support they may need. Someone with mild learning disabilities may only need support with social aspects of their life. However, someone with severe or profound learning disabilities may need full time care and support in order to carry out every day activities of daily living.

Pompe disease

Pompe disease

Pompe disease is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages. Pompe can affect people of all ages, with symptoms first occurring at any time from infancy to adulthood.

Pompe disease is caused by a defective gene that results in a deficiency of an enzyme, acid alpha-glucosidase. The absence of this enzyme results in excessive build-up of glycogen, a form of sugar that is stored in a specialized compartment of muscle cells throughout the body.

Pompe disease belongs to a group of more than 40 rare genetic diseases called lysosomal storage disorders (LSDs). All LSDs share a similar underlying cause: a missing or malfunctioning enzyme in cell lysosomes.

The effects of Pompe disease vary from person to person. Most people with Pompe disease experience muscle weakness in the arms and legs, usually most prominently in the legs, making walking or climbing stairs difficult. Muscles used for breathing are also often affected, making it difficult to breathe, especially when lying down.

Infants typically have extreme muscle weakness and a “floppy” appearance. X-rays usually reveal a greatly enlarged heart. Other symptoms include breathing difficulties, trouble feeding, and a failure to meet developmental milestones such as rolling over and sitting up.

Children and adults tend to have greater variety in their symptoms, often including weakness of the leg and hip muscles, leading to difficulties with mobility, as well as breathing difficulties. Older patients rarely have the heart problems typical in infants.

InVent Health supports clients and their families with this disease by creating bespoke packages of care to support their needs. Many patients require some form of respiratory support such as oxygen therapy, non-invasive or invasive ventilation and may need assistance with their feeding. Our staff receive in depth training on how to manage the equipment and provide unrivalled support for people effected with Pompe Disease. The package of care provided will evolve around the client as their needs change, we will be there to support our clients throughout the duration of the condition, from child to adult-hood.

Epilepsy

Epilepsy

Epilepsy is one of the most common serious neurological conditions in the world. It affects around 600,000 people in the UK with around 87 people diagnosed with epilepsy in the UK every day.

Epilepsy is a condition that affects the brain and the person has a tendency to have epileptic seizures which are caused by abnormalities in the electrical activity of the brain. Epilepsy can start at any age and may persist throughout a person’s life.

There are many different types of seizures. What happens to a person during a seizure depends on which part of the brain has been affected. In some seizures the person may remain alert and be aware of what is going on around them but in other types of seizures they may lose awareness and have reduced states of consciousness. In some seizures the person may have unusual sensations, feelings or movements, some may go stiff, fall to the floor and jerk.

During seizures the person may sustain injuries, have increased vulnerability due to changes in awareness and could be at risk of developing brain damage and dying if the seizures continue for prolonged periods and are not managed and treated properly.

At InVent Health, we provide all our staff working with people with epilepsy with training in the recognition, management and treatment of epilepsy and seizures including how to manage emergency situations and giving emergency medication. We provide documents for the recording of seizures and will work with the client, team and family to ensure the medical team get as much information as possible to ensure they receive the right and best treatment options. We will support clients and their families with their communication with other medical professionals and external multi-disciplinary members.

We can also provide bespoke epilepsy training for families managing a personal health budget.

 

Glycogen Storage Disease

Glycogen Storage Disease

People affected by Glycogen Storage Disease (GSD) have an inherited defect in one of the enzymes responsible for forming or releasing glycogen as it is needed by the body during exercise and/or between meals. Glucose is a major source of energy for the body. It is stored in the form of glycogen in both the liver and muscles and later released with the help of enzymes.

There are at least ten distinct types of GSD. They are classified by a number and by the name of the defective enzyme, and sometimes by the name of the doctor who first described the condition. For example, GSD I, a defect in the enzyme glucose-6-phosphatase, is also known as Von Gierke Disease. Some GSD Types have subtypes, such as 1a and 1b.

GSD can affect the liver, the muscles or both. Diagnosis of the type of GSD is made on the basis of an individual's symptoms, the results of a physical examination and of biochemical tests. Occasionally, a muscle or liver biopsy is required to confirm the actual enzyme defect. Increasingly DNA testing is a help in diagnosis.

All forms of GSD, except some forms of Type IX (liver phosphorylase kinase deficiency), occur when a child inherits the affected gene from both parents (autosomal recessive inheritance) each of whom is a carrier but not affected themselves. This means that for each pregnancy in affected parents, there is a 1 in 4 chance that the child will inherit both defective genes and thereby be affected.

We can help support people with any form of GSD by providing bespoke packages of at-home care. An individual care team will be trained on how to monitor the condition, manage the required feeding regime and what to do in an emergency situation. The InVent Health team can also support the patient and family with communication with the medical professionals involved in their care to minimise any additional stress.

We’re able to look after children with this condition who require continuous feeding at night via naso-gastric tubes.



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