Charles is going home
The following is the journey of our personal experiences.
We were initially told that my husband Charles would never go home; he would be hospitalised for the rest of his life.
From that moment on it was my goal - Charles would return home. Charles was eventually discharged home after two years in hospital and slow stream rehabilitation.
If you have a similar goal I hope that this information will give you a clearer picture of how to achieve their homecoming.
Depending on the level of care required your loved one may be granted full continuing care at home. There is a continuing care criteria on the NHS government web site; level one continuing care is the highest level of life long care available.
During the course of rehabilitation you will meet social workers and be involved with the primary care trust (PCT) Continuing Care Manager. The PCT Care Manager will have been assessing needs, during the ongoing funding, and will pass findings onto the panel as to the care required when discharged. Ensure you engage many discussions with the care team so that they are fully aware of your decision to take your loved one home.
There are a number of issues to consider:
- Court of Protection
- Suitability of accommodation
- GP for home visits
- District Nurses
- Emergency care
- Mobility vehicle
- Ongoing community services
- Pharmacy deliveries
- Stock at home
How will you manage financially if you want to get your loved one home?
This area might well drive you crazy as everything seems to take so long and appears so complicated. However, don’t despair because our BIG site is happy to advise that The Brain Injury Group Solicitors (who are found across the UK) are looking to provide a service to help families cope with this additional paperwork. Check out their site on www.braininjurygroup.co.uk
How will you manage?
Main breadwinner incapacitated?
Family finances – unable to access?
Will you get any grants, allowances or government assistance? www.direct.gov.uk
Look at Incapacity benefits and Disability Living Allowances and don’t be shy to ask for help completing the forms – the social workers at the hospital will happily assist if you need advice.
Please make a note that you will need a medical certificate from the hospital for claim forms.
Court of Protection
It may be necessary for you to apply to become a Deputy for your loved one. This is a timely process but necessary if you are to obtain permission to act on their behalf. This Deputyship is probably necessary because severe brain injuries will leave one without the mental capacity to agree to a normal style Power of Attorney. You need to be in a position to deal with financial matters and normal every day affairs on behalf of your loved one.
A deputyship will allow you to have some control over your loved one’s finances and claim benefits for them e.g. Incapacity Benefits or Disability Mobility Allowances. There is a fee for this Deputyship but the web site has all the relevant forms and details on line.
www.justice.gov.uk - type in court of protection and lots of different headings will appear.
Depending on how complicated your circumstances are you may well need a solicitor to help you. Again, The Brain Injury Group Solicitors might be able to help you with this. Their website is www.braininjurygroup.co.uk.
It should also be noted that you will be required to complete financial documents on an annual basis.
Suitability of accommodation
This needs careful consideration and forward planning, as many houses are not suitable for wheelchairs. Building work will probably be required to include extra specialist shower facilities, ramps etc. You should start thinking about this as soon as you can.
Unfortunately, it can take months to get an initial building assessment for a grant. There is plenty of paperwork to complete before any grants are available. Each local authority is different and some are quicker than others! It may take a couple of years for grants to be approved and work finished.
If you are seeking a grant you should remember that no work is permitted until you get the grant councils go ahead. If you spend money it will not be refundable at a later date. Look on the site www.direct.gov.uk.
It may be that your house is suitable to be adapted in which case things should run a little more quickly and smoothly.
Depending on time limits and your personal finances you may choose toorganisethe building work yourself. In our case, we were pushed for time as Charles was being discharged and we decided that the grants route would be far too slow for us. We used our savings to create a wheelchair friendly environment, wet room, ramps etc. We decided on a portable hoist rather than ceiling tracks and this has worked well for us.
There are specialist builders available so choose a reliable one who has solid knowledge of community disability standards. No point building a nice shower room and it’s too small for all the extra equipment e.g. shower trolley, chair/commode, hoist and general bathroom storage.
GP Visits at home
It’s a good idea to arrange a meeting with your GP before your loved one goes home, as the GP will need to be aware of all the neurological medications and complications.
Your GP will probably not have specialist neurological experience and might be guided by your experience. He will be the contact for referrals to clinics, further rehab and therapists plus prescriptions for medications.
Be warned though, it is frustrating as GPs are very busy and what seems like an emergency to you might not be viewed that way by the surgery receptionist! Good tip is to find the name of the Practice Manager and put pressure on them when needed.
The GPs should also liaise with the District Nurses on a regular basis.
You will need to work closely with the District Nurses to ensure everything you need is organized.
If your loved one is peg fed it is a good idea to check that someone on the District Nurse team is trained with gastronomy peg replacements. If not, then insist training is given. I am now able to change a peg in an emergency!
The nurses may also assist with ordering incontinence products.
The District Nurses should also know how to set up the profiling bed and air mattress. They will also liaise with the PCT and GP to supply other equipment e.g. suction machines etc.
Our experience is that the district nurses are extremely busy and your patience is required!
There is an “out of hours” telephone line for emergencies when the GP surgery is closed. It’s amazing how many sicknesses come to light late Friday night or over the weekend when the surgery is closed! Your GP surgery will have this emergency number on their answer-phone machine. We have experienced this service on a couple of occasions and received excellent on line advice and fast ambulance service.
Just make sure you have everything ready for when the ambulance arrives e.g. medication chart, feed, syringes, feed pump, pads, convenes etc. You may not necessarily need them but be prepared for all events.
Going back into the main hospital environment is not pleasant because the staff are not used to handling such profoundly disabled patients.
You need to be well versed on what has been happening and how you deal with your loved one at home. Stay focused making sure all the relevant details are given. You can be panic stricken in your heart but stay calm – the calmer you react the calmer your loved one will be.
Some continuing care authorities fund 24 hour care others do not - if you need to fight to achieve care at home then you may need to get in touch with your MP.
Hopefully, your continuing care team/authority will fund 24/7 carers who will be able to assist with personal care, moving and handling.
It is important you have the opportunity to be part of the process choosing the care agency as this is one of the most important long term areas. Ensure that the PCT is aware of your interest in doing this.
There are lots of registered agencies to choose from. These agencies should be registered and the Care Quality Commission is a good place to check agencies the PCT suggests.
You need to make sure you are entirely comfortable with the agency. Based on my personal experience we were lucky enough to find Rainbow Medical Services - an excellent agency but, of course, the choice is yours.
You will be assigned a Care Manager/Supervisor who will liaise with your assigned care team and assist you with queries regarding long term care and offer advice with day to day problems.
As well as personal care, moving and handing the carers may well assist with feeding, excursions, reading, passive physiotherapy and other activities which will be set out in the care plan.
Remember this is your home so you must feel comfortable with the care team; the agency must be flexible as well as caring and capable. Don’t be pushed into anything you are not entirely happy with.
It is not easy having carers living in your home 24 hours a day. You will need to adapt to a new way of thinking. If you are sure about bringing your loved one home then you will adapt and take everything in your stride. Just imagine you now have a very large family living at home helping you!
There should also be a dietician included in your community team who will visit and discuss nutrition and hydration requirements. This is especially important if your loved one is peg fed to ensure you have the correct feed quantities and that you are also able to check body weight for gains and losses. We have discovered it quite difficult to find hoist/wheelchair scales in the community but the Queen Elizabeth Foundation is quite willing to help in this area.
Hopefully, in time, your loved one’s peg feed might be reduced but you will need to discuss and co-ordinate with the dietician and speech therapist to progress this safely.
Yogurt and custard textured Nutricia puddings are available and the dietician might suggest them on prescription.
Liquid thickeners are also available on prescription from the speech therapist.
Wiltshire Farm Foods offer a range of moulded puree meals which look great, taste delicious and they deliver to your door.
Disability Motor Vehicles
Below is a link to the government’s Motability Scheme. You will need to decide whether to take advantage of this scheme or buy your own vehicle. The web site also includes a list of dealers who work within the scheme.
The Motability Scheme enables disabled people to exchange either their Higher Rate Mobility Component of Disability Living Allowance or their War Pensioners' Mobility Supplement to obtain a new car, powered wheelchair or scooter.
There are, of course, private motor companies who sell disability motor vehicles. If you need advice on buying then Graham Clarke is very helpful (see web link below).
After careful thought, we decided to buy our own adapted vehicle due to the costs involved in adding “extras” that weren’t included in the scheme.
A number of us from BIG have purchased vehicles from Graham and he will gladly bring demonstration vehicles to the hospital or to your home for trial. Graham is also able to supply winches etc to make wheelchair loading easier. Graham has proven to us that he is fair and reliable.
Ongoing community services
This is an area of concern because the community funding is very limited and it is another battle – as if you hadn’t had enough already!
You will need to ensure that you have contact details for the following people and that your GP has made referrals for them to attend to your loved one once in the community.