Whatever approach people with advanced MS and their families decide to take, it really helps if health care can be coordinated by a multi-disciplinary team. Your MS Team (neurologist and MS nurse) should be a source of support and information about the specialist services that are available, including advance care planning.
The different specialists will help make sure complex symptoms associated with advanced MS are managed well and will work at preventing complications.
For a more detailed look at care and support for advanced MS, download our publication Support and planning ahead
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Care at home
Living with advanced MS is very complicated for everyone involved, including carers and family.
It’s essential that everyone involved has the support they need, and a complete care package is provided by the various services available.
Such a care package should take care of physical symptoms, psychological difficulties, as well as delivering financial and practical help.
Find out more in our Care services section.
Palliative care services are increasingly being recognised as useful for people severely affected by MS.
In reality, not everyone finds they can access all the specialists they need, but that shouldn’t prevent you from pushing for access to what is available in your area. Ask for a referral from your GP or another specialist you are seeing, such as an MS nurse or neurologist.
Community based services provide support in your home and can also be a great help to people severely affected by MS. These may include district nurses, health visitors and community matrons. GPs can also provide regular health checks.
Read more on the healthcare pages.
If you have any problems in accessing health services, the local Patient Advice and Liaison Services (often known as ‘PALS’ for short) may be able to help.
In Scotland, the local PASS (Patient Advice and Support Service) may be able to help.
Social care is a particularly important source of practical help. It can provide aids and adaptations to the home, personal care services to help with daily tasks and needs, day care and respite care or residential care.
Find out more on our social care pages.
Respite care is short-term complete care designed to give both carers and people with advanced MS a break from the usual routine of caring and being cared for.
MS Society can support you to plan a holiday or short break as respite care. Find out more about our MS Short Breaks Service.
Long-term residential care
Sometimes coping at home with the care needs of a person very severely affected by MS can become difficult.
There may come a time when longer term residential care, either on a temporary or permanent basis, is needed.
This can be an extremely distressing and difficult decision, and it can help a great deal to have appropriate information to hand.
Find out more in our section on residential care.
MS can have a big impact on your money situation. It's worth checking what financial help is available for both people with MS and carers.
Find out more in the section on disability benefits.
The MS Society also offers financial help to people with MS. To find out more about how the MS Society can help you cope with the costs of MS or sort out a short break.
Find out more about grants from the MS Society.
Maintaining quality of life
People who are severely affected by MS often say that their quality of life is greatly reduced. Depending on others for care can mean life becomes isolated and hobbies and interests are sidelined.
Families, carers and friends can also find that stress and frustration increase.
These problems can be minimised if everyone makes an effort to make sure that quality of life is maintained.
It’s important to keep up interests and social networks.
Many people also try to find new interests, and social networks are developed that better suit their changing lifestyle.
Adaptations can be made to computers and there are other assistive technologies that can help make hobbies easier – independent living centres and other independent living organisations like AbilityNet can advise.
Days out may require practical planning, but there are sometimes local organisations that offer such activities and give both you and your carer a break.
Day care centres also often provide activities, as well as opening up new social networks, while also providing care on site. Your local MS Society group should be able to advise on what is available in your area.
Looking after your social life can also keep you connected to relationships outside your immediate family and carers, as well as helping to prevent feelings of isolation and depression.
The impact on others
Being cared for can also impact upon relationships with partners, children and friends. This often happens as you become more dependent on those you are close to for support.
People sometimes say that these changing dynamics can make it hard to maintain a romantic relationship.
Parents also sometimes find it hard when they turn to their children for help in meeting daily needs.
Carers' quality of life also matters. While many family members and friends find it easy to adjust to caring, others find the responsibility produces some physical stresses and emotional strains. It's important to make sure everyone is getting the support they need from all the services they can.
If necessary, ask for your care plan to be reviewed and remember you're entitled to these services, they're not given to you as a favour.
There’s more information for carers on our carers pages.
Planning ahead for end of life care
Everyone has the right to make choices about the care they receive now and in the future. Planning well in advance makes sure your wishes can taken into account. There are legal and practical ways to do this, including:
- Power of attorney
- Advance directive or 'living wills'
- Advance statements