Below you will find links to information about services available for those diagnosed with MND, their families and their carers. Organised by borough, there are public and private organisations, hospitals and hospices, charities and local organisations which are all here to make your life and the lives of those that care for you as easy as possible.
While no list can be comprehensive, we have tried to give you a flavour of what is available. If you are aware of other organisations that could be of benefit to people with MND, please do let us know.
Your GP and your Neurologist will likely talk you through what you need to know after your diagnosis and may refer you to one of London’s two MND Care centres for specialist advice and treatment. You will also be put in touch with the range of health and social care professionals in your area, who will be supporting you. These include occupational therapist, physiotherapist, speech and language therapist, dietician and others. You will not need to see all of these people at any one time. In most boroughs, these professionals operate as multi-disciplinary teams, endeavouring to deliver a holistic approach to your care.
As your illness progresses, they will make assessments to determine what services you require for your care. This may include adaptations to your home, access to equipment such as wheelchairs, access to a personal assistant and access to specialist services. A key element of the Care Assessment is the Direct Payment. This is financial support paid directly to you or your carer in order to pay for your care. A council may also offer to manage your care for you, using your Direct Payment.
The Carers Assessment is similar; it determines the needs of your carer and provides information and services, including some financial support, in order to best support them and ultimately you. Many of the boroughs offer special services and organisations to help carers. They will provide advice about wellbeing or financial support and training in first aid and basic care. They may even provide an opportunity to have a coffee and a chat or even a massage.
This will of course be a difficult time for you, your friends and your family, so it might be an idea to consider attending counselling. A professional counsellor will provide an opportunity to talk through your situation and will give you the tools to help cope with what is happening.
Not all of London’s boroughs offer the same level of services and so you may wish to supplement the support provided by the council with the services of a Hospice or private organisation. Your GP should be able to recommend a suitable service, as should your local council during your assessment. But also included in the information provided is the website “NHS Choices”, which provides a comprehensive list of care services in your area and how they are rated by the Care Quality Commission (CQC).
Every hospice listed will accept a referral from you or your GP, but every borough has at least one local hospice that will be easier to access and better support you than a more distant hospice. Most of the hospices provide the same basic services: home care, where a nurse or volunteer from the hospice visits and provides care for a few hours a day; outpatient services, where you will visit the hospice for a few hours to access things such as physiotherapy, communication therapy, counselling or social gatherings; inpatient care, which is similar to outpatient care, but you stay at the hospice overnight for a period of time. Both outpatient and inpatient care will provide Respite care, which gives your carer an opportunity to have a break from a few hours to a few days. Most hospices also provide social workers to provide counselling and advice to you, your family and your carer.
You may have financial concerns. Once again, the council will offer advice regarding benefits and financial advice as will the hospices and the carer support organisations. There is also the Citizens Advice Bureau and The Money Advice Service who can provide advice and information regarding finances and the benefits you are entitled to.
Please also be aware that your local branch of the MND Association can provide financial support. For more information on this support, take this link:
We do not take any responsibility or liability for these links. Please let us know if you find any of this information to be no longer current, or if you are aware of any other services that could be of interest.