When the person you care for comes home from hospital
For some people with MS, particularly those who have relapses, stays in hospital can be frequent. With each admission it is important to ensure that when the time for discharge comes around, there will be adequate support services at home and that the needs of anyone providing care are also considered. Patients can sometimes end up back in hospital if they are sent home before they are well enough and without the proper support in place.
As a carer, you may feel worried about coping when the person with MS comes home from hospital, particularly if their care needs have increased. Hospital staff are expected to work closely with staff from social care services, the local authority housing department and other service providers, to come up with a ‘discharge plan’ which considers the health and social care needs each patient may have once they leave hospital.
If the person you are caring for is going into hospital as a planned admission, it should be possible to start planning for discharge right at the outset. This will ensure that there is as much time as possible to make preparations for their return home. Even if the hospital stay isn’t planned, soon after admission they should be assessed for any additional health, social or housing needs to be put in place before they leave hospital.
You should be given a copy of the discharge plan, outlining all the arrangements that need to be in place prior to them coming out of hospital. It should include:
the name of the lead person responsible for making sure that the discharge goes safely and according to plan
details of any necessary medication and treatment
details of any support and equipment that needs to be provided
the transport arrangements that will need to be in place to get them home
how your training needs will be met if you will need to provide increased care or administer medications
As their carer, you should be involved in the development of the discharge plan. This may involve hospital staff seeking the permission of the person with MS to disclose information about their treatment and care needs. If they are not willing for you to be given this information, it becomes all the more important for your personal needs to be considered,
particularly if these conflict with their needs and expectations.
You should not feel pressurised to agree to discharge before you are ready, or before any agreed services have been put into place. Hospital and social care staff must take your needs as a carer into account when discharge is being planned, and this might involve you having your own assessment. When discussing discharge, think about:
How you are going to manage with your other commitments, such as work and parenting.
Ask about support that might be available to help you to balance these commitments.
Do you understand the ongoing health and care needs of the person you care for, and do you feel able to manage these?
You may feel you need professional home care built into their ongoing care plan.
If their condition has deteriorated, do you feel willing and able to take on the increased caring responsibilities? Will these affect your relationship in a negative way? You are within your rights to refuse to take on these extra responsibilities if you are worried about your relationship in this way.
Is a home visit by an occupational therapist, for example, required to consider any necessary equipment or adaptations to the home? This should be completed and all agreed equipment or adaptations put in place before discharge from hospital.
If there is a charge for social care services, has their ability to meet the cost been assessed and do you agree with the decisions that have been made?
When it’s time to come home it is important to make sure that arrangements for leaving hospital have been sorted.
For instance:
Has transport home been organised if you need it? Some MS Society branches are able to help with this.
Has the GP of the person you care for been informed about the discharge?
Have you been provided with any necessary medicines to last until an appointment with the GP can be made?
Have you been provided with information and, if necessary, training to cope with any new symptoms?
If any necessary arrangements have not been put in place, do raise your concerns, even if it means that you have to refuse for the discharge to go ahead. If your concerns are not being addressed by the staff closely involved with the treatment of the person you care for, ask to talk to the consultant. If this does not achieve what you hope, you can raise a complaint with the hospital. There are different procedures for making complaints in the different nations of the UK. The Patients Association has information about the NHS complaints procedure for all parts of the UK.
A person cannot stay in hospital indefinitely and the hospital staff may suggest that they move to a residential or nursing home instead. If you have concerns about the ability of the proposed home to meet the ongoing care needs of the person you care for, you can ask your health authority to review the decision not to provide care in hospital. The health authority should give an explanation within two weeks.
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If you are still not satisfied with the outcome, you can contact the relevant ombudsman for your area.
See page 110 for patient rights for hospital discharge in England.
Remember, you can refuse to provide care and the team who are planning the discharge will need to consider alternatives. It is often very difficult to refuse to provide care, but it may be the only way of getting staff (who are working with limited budgets) to agree to provide the services that you need.
General mobility
If someone is diagnosed with MS and has a driving licence, they need to inform the DVLA and their insurers . This doesn’t necessarily mean that they will no longer be able to drive. A great many people with MS continue to drive, sometimes after having adaptations made to their vehicle.
Provided a doctor’s report confirms that the person is fit to drive, their driving licence will either stay as it is or be renewable – every year or every three years. This is in common with many medical conditions where situations may change over time.
Many disabled drivers are entitled to a Blue Badge parking permit. Each local authority is responsible for issuing Blue Badges and it is often possible to apply online. Contact your local authority for more information. If you plan to use the Blue Badge in another local authority area, it can be wise to check the parking restrictions there, as the Blue Badge scheme is not identical across the country.
Many people use their Disability Living Allowance (higher rate mobility component) to hire or purchase a car from the Motability Scheme. Further information on how the scheme is managed, information on the range of cars available and an application form are available from Motability. i
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FURTHER READING
Motoring with Multiple Sclerosis Published by Ricability
(available free from the MS Society)
Wheelchairs and scooters
For some people with MS, it becomes necessary to use a wheelchair or scooter. Sometimes people avoid this for as long as possible, but then find that once they do start using one, it provides them with a new lease of life, giving them much greater independence.
Many people first start using a manual wheelchair. If they have sufficient strength in their arms, they may be able to propel the wheelchair independently, but in many instances, they will be pushed by another person.
People tend to think about purchasing a powered wheelchair if they can no longer manage their standard manual wheelchair. An alternative option is to go for a lightweight wheelchair, many of which are much easier to self propel and manoeuvre than standard manual wheelchairs. Their relative lightness also means that they can be easily lifted in and out of a car.
Wheelchairs and accessories are provided through a number of different routes. In England, the NHS Wheelchair Service is responsible for assessing and providing
wheelchairs to individuals who have permanent difficulties with walking. In Scotland it is the NHS Wheelchair and Special Seating Service, in Wales, it is the Artificial Limb and Appliance Service, and in Northern Ireland it is the DHSSPS Wheelchair Service. Exactly what they will provide varies from place to place.
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Powered wheelchair Lightweight wheelchair
Manual wheelchairs are the most common wheelchairs provided but other options include:
Indoor powered wheelchairs for users unable to manually propel indoors
Attendant controlled powered wheelchairs for when carers have difficulty pushing a manual wheelchair outside
Indoor/outdoor powered wheelchairs controlled by the disabled person You can find the details of your local wheelchair service by contacting NHS Direct on 0845 4647 in England and Wales, and in Scotland by contacting NHS Inform on 0800 22 44 88. In most cases, referral to the wheelchair service is usually via a health care professional, but it is sometimes possible to contact them direct yourself – a self referral. Each wheelchair service sets its own eligibility criteria within broad national guidelines. If the person you care for does not meet the eligibility criteria of the wheelchair service, you may need to consider private purchase.
Many people use their Disability Living Allowance (higher rate mobility component) to hire or purchase a powered wheelchair or scooter from the Motability Scheme. For this, they will have to surrender part or all of their weekly Disability Living Allowance instalments for an agreed length of time. Further information on how the scheme is managed, information on the range of wheelchairs and scooters available through the scheme and an application form are available from Motability.
If the person you care for is not eligible for the Motability Scheme and cannot afford to purchase a wheelchair or scooter privately, it might be worth considering applying to a charity, benevolent or occupational fund for financial help. The MS Society, for instance, can give grants toward the costs of wheelchairs and scooters.
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FURTHER READING
A guide to grants for individuals in need: Directory of Social Change
Buying second-hand is sometimes an option but it is very important that you make sure the equipment is suitable and safe for the intended user, and that it is in good working order. Some commercial suppliers of wheelchairs also buy unwanted vehicles, recondition them, and then offer them for sale. This route may be more expensive but the equipment is likely to have been serviced and should be in good working order.
If the person you care for is considering purchasing a wheelchair they will need to think about any necessary adaptations such as level or ramped access into the home, possible widening of doorways to accommodate the wheelchair width, and altering of room layouts to facilitate wheelchair movement. Powered wheelchairs require a secure and waterproof place for storage and charging batteries.
Wheelchairs, particularly powered models, are expensive, so it is essential that you do not rush into making a purchase.
If at all possible, try out a range of different models. There may be a Disabled Living Centre near you where you can see and try out different equipment, or a Mobility Centre which focuses on vehicle adaptations and wheelchairs.
To find out the address of your nearest Mobility Centre, contact the Forum of Mobility Centres.
Many suppliers of powered wheelchairs provide a home demonstration service, which allows users to try out the vehicle at home. If you go down this route, take your time over making any decision to buy, and don’t feel pressured into making a purchase there and then.You are perfectly at liberty to think things through in your own time.
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Some vehicles allow the wheelchair user to drive straight in
People with MS may need specialist wheelchair seating and it is vital that the user is accurately assessed for the correct seat size and style as this has a direct impact on posture and comfort. Inappropriate seating can lead to serious back problems and may worsen existing MS symptoms.
If the person you care for uses an electric wheelchair, you might need to adapt or even change your car, so think carefully before making a purchase. Solutions include powered lifting units that raise the user and the complete wheelchair into the car, into the space previously occupied by the seats of the front passenger or driver. Alternatively, some vehicles are designed so the wheelchair user can drive straight in while remaining in the wheelchair.
Although not legally required, it is good practice to obtain insurance if you use a scooter or wheelchair – at least public liability insurance, covering accidental damage to other people and property.
FURTHER READING Insurance and MS
MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)
The Disabled Living Foundation produces free factsheets on many subjects including:
Wheelchairs and scooters
Choosing pressure relief equipment Clothing for wheelchair users
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Moving and handling
If you have to help the person with MS to change position or move around, it is very important that you are provided with guidance and training in moving and handling. If you do not understand how best to assist the person you care for in this way, you could be risking your own health, and theirs. This sort of training is often provided by the occupational therapy service or by district nurses. Some carers centres run training sessions too. Your MS Society branch may know of local courses or even commission training itself.
One of the problems with accessing training is that there are strict health and safety rules for paid care staff who help people to move. In all but a few cases, paid care staff must work in pairs and if a person needs lifting, then appropriate equipment such as a hoist should be used.
Many professionals worry about giving advice or training to family carers who will need to do similar tasks on their own, often without equipment. Some refuse to provide training at all, stating that to do so would leave them open to litigation if a problem then occurred.
If a piece of equipment is provided by a professional they have a duty to provide training to use that piece of equipment.
There will also be a trainer in the community you can access for moving and handling but they will only advise on safe practice.
There is also information in the MS Society factsheets Posture and movement 1 – an introduction and Posture and movement 2 – moving well with MS about safe moving and handling
techniques if you have to help the person you care for to move.
If you need to move the person you care for, think carefully about whether you can safely move them yourself. Remember, the next lift could be the one that seriously hurts your back!
If you decide to carry on,
Is there anyone who can help you?
Are you appropriately dressed?
Is the environment safe?
Principles of safe moving and handling
Always explain what you are about to do to the person you care for, providing reassurance if necessary.
Always seek guidance and training from a suitably qualified health or social care professional.
Use handling equipment that has been provided. Equipment itself can be dangerous.
Only use it if you have had instruction.
Wear appropriate clothing and footwear.
Maintain a good posture – keep your back straight, bend at your knees and avoid twisting.
Use your legs and body weight to provide power and so avoid strain on your back.
Keep your head up when carrying out a manoeuvre – this promotes good posture.
If you are helping someone manoeuvre from a wheelchair, ensure the brakes are on.
Make sure you have enough room to carry out the task safely.
If you are holding on to the person you care for, make sure that you are not causing them any discomfort or are not at risk of damaging any fragile areas of skin.
Take your time.
Know your own personal limitations and do not exceed them.
The information provided above is not intended to replace more structured and personalised training or guidance.
With a complex condition such as MS, guidance and training must be tailored to each person’s needs. All moving and handling operations carry risk, both to you as a carer and to the person you care for.
Moving and handling aids
If the person you care for needs quite a high level of assistance, you may benefit from the use of specialist equipment. Although it can feel quite strange having medical equipment around you, these sorts of aids can benefit you and the person you care for, making your tasks safer and easier, and allowing them to regain some of their independence.
This is not a comprehensive list of moving and handling aids. Do make sure that you seek professional advice about the sorts of equipment that would be best for your situation, as well as training on how it should be used.
The MS Society factsheets Posture and movement 1 – an introduction and Posture and movement 2 – moving well with MS include advice on safe moving and handling techniques.
Bedblocks
These are heavy blocks with handles that a person can use to help them manoeuvre in bed. The user does need to have sufficient strength in their arms and legs in order to use them effectively.
Bed pole hoist
This device has a frame that fits under the bed base for stability. It can help a user to sit up, change position and get into and out of bed.
It shouldn’t be used to lift the entire weight of the person from the bed.
Bed lever/grab handle These can help the user to move when in bed, and also to sit up and transfer to and from the bed. Part of the structure fits under the bed or mattress to hold it in place.
Equipment that a person with MS might use without help
Equipment that you might use to help move the person with MS
Mattress elevators These can help the person to sit up in bed. They can be used with knee breaks or grab
Mattress elevators These can help the person to sit up in bed. They can be used with knee breaks or grab