I can only apologise for the lack of posts recently. I have spent the past two weeks in hospital after losing the use of my legs very suddenly. They currently don’t know why, and tests are still ongoing but I’m hoping to be going home this week. But this has thrown everything out of the window. I thought I was at stage where I could just about manage (with a fair bit of help). Now, I can’t stand, I can’t access anything in my kitchen. I can’t access anything upstairs in my house. I can’t drive, and I can’t wheel myself about the house due to the size of the wheelchair the hospital have given me.
At first I thought…I am totally stuffed (to put it politely)! But trying to be the pragmatist that I am, I came up with a list of what needed doing. Referrals go awry and in our over stretched system here in the UK. You need to be your own advocate to make sure that you get all the things you need. The more complex your conditions, the more difficult it becomes to keep on top of stuff yourself. I cannot thank my mother enough for being on the phone at 9am to a social worker, making sure I could get out of hospital with the right support. Anyway back to this list…
If you leave hospital unable to walk/ unsteady on your feet, don’t let them send you home without provisions in place to help you.
Their waiting lists are usually very long! An urgent referral in my area is a 3 month wait. As I’m currently bed bound, it may be a little quicker. But I’m not holding out much hope! If you are sent home with a hospital wheelchair, make sure its been fitted to you. If you’re not a regular wheelchair user, footplates can seem like a trivial thing. They actually make a massive difference to comfort and support. If you need a wheelchair but weren’t sent home with one, the Red Cross hires them in many areas. It took a few attempts to make sure a wheelchair services referral was put through. It can be done by any medical professional but is ideally done by an occupational therapist.
I’m currently waiting to be seen by outpatient services, as I need specialist neurological physio. If you need help with physio once home, you can be referred to the community physiotherapy department. They normally come to your home for a short time whilst you’re getting your mobility back around the house. This can be done through the hospital or your GP. If you’re not housebound, you can also ask to be referred to outpatients physio.
Help around the house
If you feel you will need significant help with your personal care (washing, dressing, taking medication, toileting) when you go home, and don’t have someone at home that can definitely be there when you need them, make sure contact with social services is made.
Social services assessments
Make sure you call before leaving hospital, ore even better, get another professional to refer you. In some areas an assessment of your needs will be done whilst you’re in hospital. In others they use a reablement team. They will work with you to enable you to do these activities yourself. After the (normally) 6 week period, if you still need support they will refer on for further assistance. I personally feel that direct payments are the best option for most people. It gives you the autonomy to employ who you want and have them doing what you need, when you need it. You also get more hours out of it than you would if you use an agency, as they cost more.
Social services are unfortunately now a risks-based service as much as they are a needs-based service. It’s important to write a list of the risks associated with having no support as well as tasks you need help with. This could be the risk of falls, not remembering to take medication, not eating regularly etc. Its easy to minimise the risks in your head to give yourself more confidence about going home, but be realistic when talking to professionals.
Other Sources of Assistance at Home
If you can’t or don’t want to get assistance from social services, there are other options through other organisations. Whats available is dependent on where you live and your age. Over 55s can access support from Age UK (depending on your area). Everyone can access support from the Red Cross (again, dependent on area). There are other charities so its best to research in your local area. The kind of help they offer is very different to that offered by social services. Less personal care more support with house upkeep, shopping and collecting prescriptions.
Occupational Therapy equipment
If the hospital Occupational Therapy service has ordered equipment for you, make sure someone is home to receive the delivery. Re-arranging the delivery can take weeks! Ask that all equipment is checked before it’s signed for. It can take time (as I’ve found out) for alternatives to be provided. If you find you need further equipment for essential tasks then contact your local social services department and they can normally refer you on to the community Occupational Therapist.
General medical stuff
Nine times out of ten, you’ll be sent home with at least one copy of your discharge summary. This just outlines what caused you to come into hospital, what tests and treatment they may have done and the outcomes of these. It should also tell you when/if they are going to see you as an outpatient. Make sure you read it, and contact your GP after a day or two to make sure that they have also received a copy. Keep it safe as it’s very helpful for future reference. When you see the person who is writing your discharge summary, double check that all of the outpatients clinic, treatments and tests have been booked so none fall through the gaps.
Its also worth just checking that any medication they have suggested to you they are sending home with you, as it can be difficult to get the GP out to do home visits and prescribe.
I should have also been referred to a district nurse, as I’m bedbound. They can help with injections, wound dressings, urine testing, pressure sore care and prevention and whole lot more. You can ask for you GP, OT or social worker to refer you.
Back to normality…
After being in hospital its very easy to forget the normal things – cancelling appointments, making sure there’s food in the house that someone can warm up for you. Don’t push yourself, you’re still recovering! Be self compassionate. Let others help you. Be clear about what your needs are, and most of all keep your spirits up. That’s the one I’m struggling with the most.
I’m currently helping friends of mine with a bit of fundraising for a wheelchair which would at least allow me to get around the house and outside for a bit. But I have been feeling completely lost and alone. The furbabys – Jessica and Scapa have been a great help. But human interaction is the biggest lost when house or bed bound. Ask friends to pop by and say hi! I no longer care who sees me in my PJs (as long as I am actually in my PJs)! Keep up contact with them even if it’s a quick hi between naps. Although it might feel like your world has reduced to one room or the inside of your house, there are people out there that still care and what to support your recovery. Remember that!