This page contains information on the following subjects:
What services are available to me?
If you have a neurological condition you may need a range of services to support you and your family. Some conditions are ongoing and you may want long-term support. Many available services will help maintain and improve your quality of life. It is therefore important for you to know how to access to them.
Whilst services will often be available when you need them, at times it may take a while for services to be arranged. It is therefore important to ask as soon as, or even before, if you need help.
You may have to ask more than once and obtain advice from more than one person.
You will not have to pay to use most services, however you may wish to pay privately for some services and you may be asked to provide a contribution towards others.
You may wish to use some or all of the following services.
National health services
The NHS has Primary Care Trusts and NHS Trusts. Your Primary Care Trust is responsible for your general practitioner (GP) and other staff, such as community nurses, operating from your GP’s practice or health centre. Primary Care Trusts also run community rehabilitation services using physiotherapists, occupational therapists, and speech and language therapists.
The second quality requirement of the NSF places emphasis on prompt access to specialist neurological expertise (as close to home as possible) for a person suspected of having a neurological condition. As well as primary care services, your NHS Trust provides hospitalbased services, including outpatient services and will be linked to a number of Primary Care Trusts. It is responsible for your local district hospital, neurology centre, neurorehabilitation unit and neurosurgery centre.
NHS Trusts also sometimes run specialist units for some of the common neurological conditions, for example stroke units and multiple sclerosis clinics. There are also specialist clinics, for example pain clinics. Access to high quality rehabilitation services in hospitals or other specialist settings comes under the fourth quality requirement of the NSF, which states that people with neurological conditions should receive the help they need before returning home for ongoing community rehabilitation and support.
According to the eleventh quality requirement, people with long-term neurological conditions should have their specific neurological needs met while receiving treatment or care in any health or social care setting. Councils provide community care services, usually through social services departments. Services available can include:
- help with personal care
- meals on wheels
- laundry services
- equipment and aids to use in your home
- free or subsidised travel on public transport.
You may have to meet certain criteria to be eligible for these services and you may have to pay for some of them. A community care assessment is undertaken by a social worker/care manager to find out your needs.
If you need help you can contact your social services department and request an assessment from them. Their details are listed in your local telephone directory. Your GP, specialist and others involved in your care may also advise you about contacting social services.
After your assessment your social worker/care manager will draw up a copy of a care plan, which summarises the services to be provided. You will be given a copy of this and it should be reviewed by social services every year. In some areas you may be under the care of a social worker from a specialist social services disability team.
The 2006 white paper: Our health, our care, our say states that people with long term conditions should receive timely, appropriate assistive technology and equipment to support them to live independently, help them with their care, maintain their health, and improve their quality of life.
The Government intends that in the future there should be one point of contact for you to request all your equipment needs. However, at present equipment may still be provided from a variety of sources in your area. The table below gives you examples of equipment available and how it can be obtained.
|Equipment/service required||Available from||Referred by|
|Daily living equipment eg. equipment and household gadgets||Social Services Department||Social Worker, self referral|
|Adaptations to your home eg. stair lifts, making it easier to use the bathroom||Social Services Department||Social Worker, Occupational Therapist, self referral|
|Mobility equipment eg. wheelchairs||a: the wheelchair service at your local hospital trust or
b:your local wheelchair distribution centre
|a: Physiotherapist at local hospital, Community physiotherapist via a referral from your GP,
b: Occupational therapist or self referral
|Home nursing equipment eg. pressure relief mattress||Community nurses||GP|
|Equipment for employment eg. support workers if someone needs help at work||Disability Employment Adviser at your local Job Centre||Self referral, employer|
You cannot usually get financial help after you have already started a building adaptation or bought an item of equipment, therefore you should apply before making
You and your carers may qualify for state benefits. If it is your
child who has a neurological condition they may qualify for benefits in their own right. Depending on your circumstances, financial help may be available:
- for help to look after yourself
- for help getting around
- if you are unable to work
- towards the rent
- towards paying for prescriptions. Prescription exemption forms are available from your GP’s surgery.
Benefits may also be available for people who work and for students. Some benefits, for example the disability living allowance, are paid on top of any other income and benefits.
Any medical condition which prevents you from holding and handling phone books qualifies you for a free directory enquiries service. This applies to a number of neurological conditions. Phone 195 and ask to be registered for the free directory enquiries service. It is important to apply for state benefits as soon as possible as applications cannot be backdated. As benefits and allowances often change please ensure that any information you have about them is up to date.
Charities provide a wide range of services for you, your family, carers and friends. Typically they can:
- provide information about your condition and the help available to you. Many have staff with expert knowledge of particular conditions.
- give support and guidance by telephone to anyone who calls. Some organisations operate helplines, for you to discuss your condition. Phone numbers for helplines are listed in Part 3 of this booklet.
- link you to local support groups where you can share personal experiences and receive practical support and advice.
- advise you on the best course of action to obtain all the help you need.
The inclusion of high quality and timely information as an important component of person-centered services is part of quality requirement one of the NSF.
According to the NSF, people with long term conditions are to have the access to appropriate vocational assessment, rehabilitation and ongoing support, to enable them to find, regain or remain in work and access other occupational and educational opportunities.
Disability employment advisers located at your local job centre provide specialist advice and support concerning all aspects of employment.
If you are employed when diagnosed with a neurological condition, assistance is available to help you stay in your job. The access to work scheme run by the employment service can support you, for example by providing funding for alterations to the workplace and towards transport to work.
The Disability Discrimination Act gives people with a disability, or former disability, the right not to be discriminated against by an employer. Some people with neurological conditions will be covered by this Act.
Expert Patients Programme
The Expert Patients Programme is a NHS initiative which provides training opportunities for people with chronic conditions, which includes neurological conditions. It is described as a self-management course giving people the confidence, skills and knowledge to manage their condition better and be more in control of their lives.
Next: Onset and diagnosis