Going into hospital
Hospitals can be a regular part of life with MS, especially with advanced MS. If you’re a carer, managing hospital visits can be an important part of your role. And carers sometimes need to go into hospital themselves. What then?
“I spend the first three hours in hospital answering the same questions over and over. I now have a sheet with all my wife’s relevant information on it. Staff say how useful they find this.”
Before you go into hospital
Hospitals can be a regular part of life with MS, especially with advanced MS. If you’re a carer, managing hospital visits can be an important part of your role. And carers sometimes need to go into hospital themselves. What then? Here we look at how to prepare for a stay in hospital.
It’s important to put your wishes in writing about how you want to be treated in hospital. This can take time to arrange. So it’s best do this long before a stay in hospital is on the horizon.
What would happen if you ended up unconscious, unable to talk, or just not mentally able to make decisions? This can happen after a medical emergency, in or outside of hospital. If doctors can’t communicate with you, they can’t know what treatment you’re happy to have.
If you don’t put your wishes down on paper, doctors will consult your family instead. Then they’ll make decisions they think are in your best interests. But these decisions might not be what you want.
There are documents where you can record in advance what you want to happen. These are a Power of Attorney, an Advance Decision or an Advance Statement.
Read more about planning ahead for the care you want
If you use one these documents, you or your carer need to take copies to the hospital. Let staff there know these documents exist in case they’re needed.
If you’re a carer and it’s you who needs treatment in hospital, draw up a plan for what happens while you’re away. Do this long before the plan is actually needed as you may get little notice of your need to go to hospital. Carers UK has tips on making a plan.
Learn more about creating a contingency plan
The carers organization Mobilise also has a template you can base your plan on.
Before you go to hospital it’s a good idea to create a well-ordered medical file to take with you. Include all the information you have on your medical history and previous stays in hospital. If you’re the carer, you can do this for the person you look after. At the front put the health and care teams’ contact details.
If MS means walking is difficult, there may be help with non-emergency transport. Ask your GP or the doctor who made your hospital referral. There might be an NHS non-emergency patient transport service (PTS) locally. Or ask if there’s a volunteer driver scheme where people use their own cars to take others to hospital. Read more on transport to and from hospital.
At the hospital
You or your carer will find yourselves repeating details about your condition to each new member of the hospital staff you deal with. It helps to have this in writing, with enough copies to give to hospital staff. That way you won’t forget anything. And you won’t need to say the same things over and over.
Download the Patient Information form on this page. Fill it in using pencil in case details change. Or create one on a computer that you can update.
You‘re an expert about your own MS. And so is your carer, if you have one. Make sure hospital staff are aware of your knowledge and use it.
Talking to doctors can be intimidating. Check out our tips on getting the most from discussions with medical professionals.
Read our advice on medical appointments
If you’re unhappy with the care, treatment or other arrangements, speak informally to the person responsible. Hopefully things can be sorted there and then. If you’re still unhappy, you can make a formal complaint. Ask to see the hospital’s complaints policy. Based in the hospital will be the Patient Advice and Liaison Service (PALS) service – or their equivalents in Scotland and Northern Ireland. They can help you with a complaint.
If you’re unhappy with the treatment you’re getting, read about how to get a second opinion.
Let staff know you’re a carer. Ask if there’s a carer’s lanyard you can wear. Or see if there’s a carer’s passport that you can register to have. These are good to have if staff challenge you on who you are and why you’re there.
All hospitals should give you information about local support for carers. Find out what else is available. A carer’s passport makes it easier to get what the hospital offers. This might be:
- help with parking
- food and drink
- the chance to help feed the person you care for, or help with their personal care (like washing or going to the toilet)
- the option to stay overnight, or information about accommodation nearby
- an advocate or interpreter if the patient needs one
Check if there’s a Carers Hospital Liaison Service to support you. Some hospitals have a carers champion. They might have a special space like a carers hub or lounge. Every hospital has a Patient Advice and Liaison Service (PALS) representative (Scotland and Northern Ireland have similar services). They can help you too.
Build a good relationship with the Ward Nurse in charge, and be proactive. For example, if you want to help with things like feeding, say so. And as someone’s main carer, you shouldn’t be restricted to normal visiting hours. Ask the staff on the ward about this.
A Multi-Disciplinary Team (MDT) will be looking after the person you care for. As long as the person you care for agrees, you both should be involved in this team’s decisions. Speak to someone from the team about how your views and questions can be heard.
Read more about who's who in the NHS
There might be a time when the person you care for is no longer mentally capable of making decisions. Medical staff will then meet to decide what’s in their best interests. When staff discuss these ‘best interests decisions’, they should ask you what you think (if it’s practical to do so.)
If you have MS
If you go into hospital, it can affect some benefits you claim. This is also true if you go into a residential care home, nursing or respite care.
The rules on this are complicated. Get free advice from our MS Benefits Advice Service. Call our MS Helpline on 0808 800 8000 or email [email protected]
If you have MS, you need to tell the benefits authorities when you (or your carer) go into and leave hospital. Once you’ve told them, the following disability benefits stop after you’ve been in hospital for a total of 28 days:
- Personal independence payment (PIP), Attendance Allowance, Disability Living Allowance (DLA) and, in Scotland, Adult Disability Payment (ADP)
These 28 days can cover one hospital stay. Or this can cover several stays over a set period if they’re separated by 28 days or less. These stays are added together to work out when the benefit should stop. The benefits restart once you’ve told the benefits authorities that your hospital stay is over.
Rules for those under 18 are different. And you won’t see your disability benefits or Carer’s Allowance stopped at any point if your medical treatment is private.
If you're the carer
The person you care for may be too ill to tell the benefits authorities they’re in hospital. So you’ll need to do this. When they’re ready to leave hospital, let the benefit authorities know so that payments restart. Don’t forget, they may be able to claim more in benefits if their care needs have changed since they went into hospital.
Hospital stays also affect benefits you might be getting yourself like Carer’s Allowance. If the person you care for goes into hospital for more than 28 days, their disability benefits will stop. That means your Carer’s Allowance stops too. This also applies to the Carer’s Element of Universal Credit.
What if you need to go into hospital for your own treatment? Then the Carer’s Allowance you get for looking after someone else stops after you’ve been in hospital for 12 weeks. If you get Carer’s Allowance and extra money for caring in other benefits, this extra money will be paid for eight weeks after the Carer’s Allowance stops. If you get a Carer’s Element in Universal Credit, this Carer’s Element stops after you’ve been in hospital for 28 days. These benefits will restart once you’ve told the benefits authorities that your hospital stay has ended.
Disability Rights UK have more details about benefits and stays in hospital.
Leaving hospital
Leaving hospital - being ‘discharged’ - will go more smoothly if you know how this happens. When time comes to go home, it can be a worry. How will you cope? Have you got all you need? What help can you expect?
Getting discharged can be a slow process. It can take hours for the doctor to sign someone off and for nurses to make the necessary arrangements, like transport home.
Hospitals aren’t fully staffed at weekends. So if you are looking to get a discharge on a Friday, make sure delays don’t mean you end up staying until Monday.
Each hospital has its own discharge policy. You can ask the ward manager or the Patient Advice and Liaison Service (PALS) for it. A discharge assessment will decide if the person you care for needs more care after leaving hospital. Both of you should be involved in this assessment.
If someone has more complicated health care needs, a ‘discharge co-ordinator’ will assess what’s needed. As their carer, an assessment of your needs should also be arranged.
Assessment ends with a care and support plan for the person you care for. If you’ve had your needs assessed, you’ll get your own a support plan, too. Each plan identifies what services, equipment, treatments and information is needed.
Support should all be in place before you leave hospital. Before you leave, you should be shown how to do any tasks expected of you. For example, this could be giving someone a treatment or using equipment. But sometimes it’s more suitable to get this training once you’re home.
In the plan you should find the name of the person responsible for making sure the plan is followed. There should also be emergency contact details in case things aren’t working out.
The discharge plan should cover how to get home. Some areas have free non-emergency patient transport organised by the local ambulance service.
Read more on getting home from hospital
Speak out if you see problems with anything in the plan. That includes how you’ll cope or pay for what’s in the plan. You don’t have to accept a discharge plan if you feel you can’t manage. Speak to the consultant or the hospital general manager if you feel no-one’s listening to your worries. A patient’s GP will get a copy of their discharge plan within 24 hours.
If the person you care for has major health needs and will need significant and complicated care at home (or in a care home or hospice), read our information about the fee NHS care package called Continuing Healthcare.
Read more about continuing healthcare
You can find more information about being discharged at Carers UK.
Learn more about coming out of hospital
There is also some helpful information on the Carers Trust.
Reablement is short term care that helps you get back your independence after leaving hospital. It teaches you how to do daily tasks again, like cooking meals and washing.
A reablement team might be available from your local council (or Health and Social Care Trust in Northern Ireland). The local NHS sometimes provides it.
Contact your social care services department for more details, or talk to staff at the hospital.
To get this help your council (or Trust) will carry out an assessment of your needs. If you qualify for reablement, it’s free but it usually lasts no more than six weeks.
