*** MOST RECENT UPDATE - 22/8/2013 - WHEELCHAIRS ***
What is this page?
We have long been aware that many of our clients and carers have developed and come up with novel and helpful little ways of doing things to make life a little bit easier.
Often these tips go no further than chatting around a table or appearing in a magazine letters page. We have decided to collate all the tips we can into sections and keep them all in one place so something that someone came up with ages ago can help someone else now. Why re-invent the wheel time and time again?
To contribute, please send us an e-mail marked Tips & Tricks to email@example.com and we will include it. Please understand that we reserve the right to edit any suggestions.
You do not need to be client or a carer and please also tell us if we should attribute any ideas to you by name of if you prefer the ideas to remain anonymous.
Before proceeding, please bear in mind the Disclaimer below.
Sections in Tips & Tricks - Please scroll down/click to view each section.
Managing your care package/Personal Assistants
All care agencies in the UK are regulated by the Care Quality Commisson - www.cqc.org.uk. We have regular review meetings and the latest CQC inspection report is available for you to view via the link on our ORIGIN homepage.
SIA's Moving Forward CD/folder is a useful source of information and their Helpline on 0800 980 0501 and their website www.spinal.co.uk are invaluable.
SIA also organises the Spinal Cord Injury Lifetime Learning Scheme which is a comprehensive self-management training programme for those with a spinal injury. Find out more from SIA.
This site has been set up to be a portal for all types of information relating to spinal injuries - www.apparelyzed.com
This British Government site is a good, comprehensive guide to disability related issues and support - www.direct.gov.uk/Audiences/DisabledPeople/fs/en.
There is a UK-based organisation which aims, at last, to combine the knowledge of the various medical and clinical professionals working with people with a spinal injury and which can be a useful specialist source of information and advice - www.mascip.co.uk.
These other sites are also useful:
www.scireproject.com/rehabilitation-evidence - excellent site with much up-to-date information on academic research findings
www.healthopedia.com/spinal-cord-injury/ - suggested Laurie Cooper
* Obviously, we all do all we can to avoid getting ill and needing to go to hospital but, if it happens, you may need to be aware of this point. If you have a spinal injury and are admitted to a general hospital or anything other than a spinal unit, you may have trouble getting your bowel routine/manual evacuation carried out. The Nursing Times, Spinal Injuries Association and the National Patient Safety Association have issued these instructions to nurses and hospital on the subject which we advise you keep with you, just in case - http://www.nursingtimes.net/nursing-practice/clinical-zones/continence/digital-removal-of-faeces/5057949.article and http://www.npsa.nhs.uk/nrls/alerts-and-directives/alerts/spinal-injuries/
* Dark coloured rye bread, like pumpernickel, is a great source of roughage. Eaten regularly, one slice a day, it has extremely beneficial effects on keeping the digestive system moving well. Agreed, it looks like carpet tile but smothering it with butter and jam makes it tasty as does using it as a base for an open sandwich, this is the original smorgasbord, with just about anything on it. Rye bread can be found at most supermarkets and speciality bakers. The best ones contain lots of sunflower seeds etc.
* Perhaps it is too obvious to mention but diet effects how the whole body works - and notably digestion and bowel management. Experience has shown that consumption of spicy food (Indian, Thai, Chilli) can be useful to reduce constipation and consumption of eggs can help with diarrhoea. NB - take care not to overdo it...
* Another helpful dietary supplement is bran. Use it in its basic state; which looks rather like sawdust...Add a tablespoon to a yoghurt, a pro-biotic one like Activia works well, and if you have one a day, after a week or so, you should notice the benefit.
* Many people use suppositories to aid toiletting. Obviously, these can be inserted digitally but another means is to use a suppository inserter. Two options are available on this website -www.wisdomking.com/line.asp?cc=2&swords=suppository
Using a barrier cream is advisable to reduce or prevent skin inflammation/irritation around the bottom which can be caused by toiletting - Cavilon is used in spinal units - http://solutions.3m.co.uk/wps/portal/3M/en_GB/Cavilon/skin-care/
* Manual evacuation of the bowel is essential for many people with a high level spinal injury. Often, over time, people find that their tried and tested methods cease to work or the compounds they have used for many years are no longer made. A colostomy is a radical, though very effective, solution.
* Coloplast also make various ranges of urine bags. The Conveen range in particular is popular. The 800ml legbag, stock number 5175 using NDC connectors, has a good capacity and the tube has a good wide bore for fast drainage. The nightbag, stock number 5062, has a 1500ml capacity. Contact Coloplast on 0800 220622.
* Many people with a spinal injury use a catheter for urine dranage. Various options exist, e.g. intermittent, supra-pubic and urethral. Each have fans and pros/cons but this research points to choice and circumstances being paramount - www.nature.com/sc/journal/v48/n4/abs/sc2009134a.html
* Bladder spasm can be quite a problem for people using a catheter - various treatments are available from botox to anti-spasmodics. Common anti-spasmodic medication is oxybutinin. This has a well-known potential side-effect of adversely affecting short-term memory/concentration. A less commonly prescribed and more modern treatment that does not have this side-effect is solefenacin.
* If you need a large capacity leg bag, try adapting a nightbag by cutting the tube to the right length and re-attaching the connector.
* To avoid filling up a nightbag during the night and having to call your Personal Assistant to empty it simply attach the nightbag to the tube of your daybag rather than substituting the nightbag for the daybag.
* A simple tip with obvious benefits - put a washing-up bowl under your nightbag, this saves a lot of cleaning up if the tap gets left open or the bag leaks.
* Catheters are frequently used by people with a spinal injury. This urethral catheter is a new development of the standard Foley catheter which seems to reduce the chance of contracting bladder infections - www.barduk.com/main/product.asp?sectionTypeId=2§ionId=5&productId=306
* Many of us guys use drainage sheaths and many of them leak, come off or otherwise cause problems. The P-sure range from Manfred Sauer UK work well and does not leak. Take care to ensure you get the right size. They can be contacted on 0191 291 0166.
* Often, leg bag straps are too long and need cutting to length to fit properly. They fray...and bits of stringy fabric get a mess. To prevent the fraying, after the straps have been cut to length, carefully singe the cut end of the strap with a lighter - like is done with a rope end - but obviously, avoid setting the thing alight!
* Some people have a problem with drainage sheaths chaffing the skin at its base/catching on clothing. A simple fix is to stick a single-sided foam strip around the outside of the sticky edge at the the base of the unrolled sheath, i.e. partly over the top of the edge of the sheath and partly on the skin. Single-sided self-adhesive foam strips, 15mm x 15cm stock number 1004, which work perfectly are available from: Payne Healthcare on 0161 367 8561.
* There are several thousand wheelchair accessible public lavatories around the country. These are administered/kept clean by RADAR and are kept locked to ensure only disabled people use them. To obtain a key visit: http://radar-shop.org.uk/Range.aspx?id=0
* Keep a toiletting bottle in the car at all times for obvious reasons.
* A sheepskin or a Jay cushion gel pad placed on top of the car seat helps reduce red marks from pressure on the skin.
* There are many ways of getting a vehicle (obviously buying one, but also MOTABILITY is a great scheme for new leasehold vehicles. They have also, in 2012, started leasing 'nearly new' but already fully-adapted wheelchair accessible vehicles so you will not have to pay extra and spend ages getting the work done; a great idea - see link for details - www.motabilitycarscheme.co.uk/main.cfm?type=NNWAVS&ObjectId=2657
* If your vehicle is through Motability, an excellent way of getting a vehicle, be sure to tell them you have numerous carers and they will provide 'any driver' insurance for FREE. For more information see - www.motability.co.uk
* MOTABILITY will often extend the lease on adapted vehicles from the standard periods (3yrs for cars or 5yrs for wheelchair accessible vehicles/WAVS) by TWO years and insurance is increased too.
* Alternatively, you can buy secondhand adapted vehicles from many of the conversion specialists - find these via SIA or www.mobilise.info). Examples are: www.clarkemobility.com/stock.php and www.brotherwood.com but there are many others.
* MOTABILITY will fund many adaptations directly now so we suggest ringing them up and asking them if they will fund what you need before buying them. Their number is – 0845 456 4566.
* Hand controls - these can be very expensive but funding is available from two sources. The first to try is Motability; please note that these grants are means tested. The second is the Access to Work scheme through JobcentrePlus which is not means tested. If you are employed and will use the vehicle to get to work, you can for a grant toward the cost of hand controls. For more information, see -www.jobcentreplus.gov.uk/JCP/Employers/advisoryservices/diversity/Dev_015798.xml.html
* For a wide selection of hand controls, adaptions and specialists, you are best off visiting either NAIDEX or the Mobility Roadshow.
* Many clients find difficulty obtaining motor insurance for multiple PAs or those under 25, of varying experience and non EU nationality. After some investigation, we find that these companies can help:
1 D M Cager (Insurance Brokers) Ltd
Prince Albert House, 20 King Street, Maidenhead, Berkshire, SL6 1EF
Tel: 01628-632848 - Fax: 01628-776478. Contact - Martin Bartholomew
They confirm that the Norwich Union/AVIVA have agreed to provide them with quotations for motor insurance policies on the basis of any driver cover with NO age restrictions. Their website is www.dmcager.co.uk
2 Prestige Insurance - http://prestigeinsurance.co.uk/
They do policies for any driver over 21.
3 FISH Insurance
Well-known disability insurers. They provide full cover for any driver over 21 - www.fishinsurance.co.uk/motor-insurance.php - and they can be contacted on 01772 724442.
* If you have not already got one a Blue Badge gives disabled people a wide range of parking concessions -
* Short-term car insurance - might be needed if your own insurance policy cannot be extended to cover a PA - NB - ensure the insurance company has all relevant driver details such as age, nationality, type of licence etc - http://www.money.co.uk/car-insurance/one-day-car-insurance.htm
* If you really struggle to find insurance for a driver, e.g. South African and some other non-EU licences, try hiring a car in the short-term but, again, let them know all relevant driver details - EUROPCAR and ENTERPRISE seem helpful but many others exist.
* Wheelchair accessible and adapted vehicle hire is possible in the UK via - http://www.adaptedvehiclehire.com/ and http://www.alliedmobility.com/accessible_rentals/
* High quality specialist live-in care assistance is complex to manage and costs a significant amount of money. Depending on personal circumstances, there may be funding support and advice available from one or all of these sources:
A SOCIAL SERVICES - Still the place to start for funding. Contact a Care Manager for information, funding, direct payments details etc. The phone number will be in your phone book.
B INDEPENDENT LIVING FUND - the top-up fund that works in conjunction with Social Services. From April 2002, ILF will increase their maximum contribution and operate a disregard both of client's earnings and that of the client's partners. Thus, you can earn without losing your care funding. They are also increasing allowable capital. They can be contacted for details of their schemes on 0115 942 8191.
C NHS - In 1999, a legal precedent was set which compelled the NHS to contribute to long-term care packages which have a significant 'health' component. This case, the COUGHLAN case, has had far-reaching consequences. In a nutshell, NHS funding is not means tested and this is a way by which people in the community with long-term care requirements can get a proportion of their care, equivalent to the 'health' as distinct from the 'social' component of their packages, paid for no matter what their financial circumstance is. The proportion designated as 'health' is defined by each local health authority and varies widely from 30-100%! How to claim the funding? Begin by contacting the Continuing Care Team at your local primary Health Group via your GP.
Additionally, in 2003, the Health Service Ombudsman upheld complaints that Continuing Care Funding had not been applied consistenly across the UK since its introduction in April 1996. This latter ruling means that someone whose care package contained a 'health' component in the period from April 1996 to date (which was not funded bu other government sources, e.g. Social Services) can claim to have the monies they spent on these health costs during that time reimbursed. While it may appear complex to follow up, in reality it is not and the effort of doing so can be worth many tens of thousands of pounds - yes really!
In November 2007, the Government changed how NHS Continuing Care funding is allocated in an attempt to reduce differences in interpretation of the rules by different Heath Authorities around the country. They did this by introducing a national framework for Continuing Healthcare. The documents forming this framework, the criteria on which claims are judged and a fast-track decision support tool can be found on - http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_073912
The only ones to look at are the final versions. Whether using these forms improves things in reality only time and experience will tell.
D EMPLOYMENT SERVICE - If you are working, the Employment Service can be very understanding regarding funding support workers, equipment (anything specialist disabled, including wheelchairs), fares to work if your carers have to make double journeys to take/collect you etc. They can be contacted via your local Jobcentre which again is listed in the phone book.
E WELFARE RIGHTS - Welfare Rights is a very helpful organisation to contact to ensure that you are claiming all of the funding to which you may be entitled. They are independent of Social Services/ILF and their number is listed in your local telephone directory.
F - If you are really struggling to sort out funding and/or the various funding bodies cannot/will not make decisions such as whether you can claim Continuing Care funding - contact http://carelaw.co.uk/index.html.
* Types of spinal injury. Most people will have come across these terms but please bear with us if this the case as we hear of confusion from time to time. Most notably this took the form of a Social Service department potentially providing services to quadriplegics but not tetraplegics as they thought the former condition was inherently more severe...
The medical terms for the condition resulting from a cervical spinal injury (as a result of a broken neck) are either tetraplegia or quadriplegia. Both mean exactly the same thing, i.e. that all four limbs are affected by the injury, it is just the choice of language used that is different. Tetra is 'four' in Greek and Quadra is 'four' in Latin. Tetraplegia is the term used in Europe with Quadriplegia being common in the USA and elsewhere.
The term used for the condition resulting from thoracic and sacral spinal injuries (as a result of a broken back) is Paraplegia with para from the word for 'two' in Greek to reflect that just two limbs are affected.
* We urge you to see the film 'INTOUCHABLES', this is not 'THE UNTOUCHABLES' or others with similar names. It is an excellent, funny, uplifting and realistic film about a man with spinal injury and his rapport with his PA...it is in French with English subtitles and is available via - www.amazon.co.uk/gp/product/B00A6VGLA6/ref=pd_lpo_k2_dp_sr_2?pf_rd_p=103612307&pf_rd_s=lpo-top-stripe&pf_rd_t=201&pf_rd_i=B005SD26CO&pf_rd_m=A3P5ROKL5A1OLE&pf_rd_r=094EFJ6W4RJ2T8VFCC6V - Highly recommended.
* Another film worth a watch is THE RIDE - www.theridemovie.org - the tale of four SCI guys riding quadbikes across Australia.
* It is often difficult to find trousers, or even get ones made, that fit someone in a wheelchair properly. Experience has shown that Rolli-Moden in Germany can do the job. They can be contacted on 0049 6226 960200. While their products/work is not cheap, it is of good quality and good value.
* Ladies may be interested to see this website for wheelchair-user fashion - www.wheeliechix-chic.com
* You may find that the rear seam in trousers irritates the skin causing redness or lines from creases. We have found that stretch, seamless boxer shorts/underwear work well to prevent this problem. The best style we have found are the ASICS transitive seamless boxer TGM139 - www.roadrunnersports.com These are only available in the USA and are widely available from companies such as Roadrunner Sports on 001 800 743 3206.
* To reduce dizziness in the morning, try raising the head of the bed by a few centimetres by placing blocks under the bedlegs.
* This from Helen Warwick, a PA with ORIGIN. Many of us use straws for drinking. To keep them together and avoid them getting broken/crushed and/or covered in fluff, try keeping them in a travel toothbrush case (available from chemists etc.) in your bag/wheelchair pouch.
* We are all aware just how expensive new disability equipment can be...The classified pages of the SIA publication Forward often contain ads for secondhand equipment to buy or for donation. Also a wide range of secondhand equipment is available at The Disability Equipment Register website - www.disabreg.pwp.blueyonder.co.uk. Another site where secondhand hand equipment is available is - www.disabledgear.com.
* BT have a useful option relating to Directory Enquiries. The 195 Directory Enquiry service is free for disabled people AND the operators will put you through to the number you want so you do not have to write the number down and then dial it. Ring 195 to register.
* Have you ever found that you need an adaption individually made to help your chair, car, TV or whatever work for you but been unable to find an engineer to make it? If so, for help contact - www.remap.org.uk.
* Hands free drinking systems that can aid your independence. - www.drinkup.uk.com.
* In addition to the NHS spinal units around the UK, there is one private spinal unit, i.e. the ROYAL BUCKINGHAMSHIRE HOSPITAL - www.royalbucks.co.uk - 01296 678800. They have close links with NSIC at Stoke Mandeville and private in and out patient treatment is also available at NSIC - call 01296 315131 for the private patient department. Other private hospitals offering some services include THE LONDON CLINIC and THE WELLINGTON HOSPITAL.
* One area which is often less un-addressed or is just not talked about is that of mental health. If you are feeling down, depressed, constantly negative, surviving only around your routines, reluctant to go out, get angered easily, maybe drink too much etc etc, you may well benefit from talking to a professional in the field. The best place to start is your GP, the clinical psychology department of your spinal unit or the peer support team at the Spinal Injuries Association or your friends/family.
* Autonomic Dysreflexia - this potentially serious condition, which characterised by a thumping headache/sweating, can affect people with a cervical spinal injury (and sometimes other levels). It is most frequently caused/treated by:
NB - IF NECESSARY, FIRST RING 999 AND CALL AN AMBULANCE
1 blocked catheter Medical professional to put in new catheter
2 bladder infection Treat with antibiotics
3 full/blocked bowel Empty bowel
4 pressure sore Remove pressure
This from Peter Banyard - ask your doctor for some nifedipine to keep at home (this drug will reduce the affects of dysreflexia until the appropriate treatment has been carried out) in case you get dysreflexia. Another option is to carry a GTN spray, like people use for angina.
What is autonomic dysreflexia? http://www.apparelyzed.com/autonomic.html
Medical treatments for dysreflexia -
* To keep tablets in order and to avoid taking the wrong dose, get one of the plastic boxes with compartments for daily doses marked out. You can get these from your GP.
* Root/nerve/phantom pain - at last, it appears that there is a treatment for this notoriously painful, debilitating and hard to treat condition. It is a drug called Lyrica from Phizer Pharmaceuticals - see links below:
* For obvious reasons, we all want to avoid bladder infections and these catheters are clinically proven to reduce infections - www.bardmedical.com/products/ic.aspx
* Cranberries contain a substance which is very good at reducing bladder infections (http://news.bbc.co.uk/1/hi/health/1412586.stm). Numerous cranberry products are widely available but one of the best is FSC Cranberry Concentrate tablets. At 1200mg per tablet, they are apparently the strongest available and work well when combined with drinking the recommended 2-3 litres of water a day. They are available from Kan Wholefoods in Kendal on 01539 721190 and probably from other good healthfood shops. We have also heard that a brand of tablets called Cranactin work well.
You may be able to get cranberry tablets on prescription from your GP.
Cranberry extract powder is also helpful as it can be used to mix with water to make a sugar free juice.
*** CAUTION - we have recently heard that cranberry pills/extract and warfarin, which is commonly prescribed to reduce the risk of blood clots, can react strangely with each other (http://news.bbc.co.uk/1/hi/health/3120206.stm) We suggest consulting your doctor before taking cranberry if using warfarin ***
* Another natural treatment for bladder infections is - www.dmannose.co.uk - and some people report positive results.
* One of our clients was prescribed a drug called NITROFURANTOIN to treat a bladder infection. He reported serious side effects, it caused very extreme difficulty breathing, and discontinued use immediately. Be warned. Others use this drug with no side-effects at all so the results are very individual.
* We have all been advised to drink around 3 litres of non-alcoholic fluids each day to reduce the chance of getting bladder infections. While this is undoubtedly sound advice, we have become aware of a potentially VERY SERIOUS side effect namely, low blood salt as a result of the flushing effect of the high fluid intake. We advise you to ask your GP about testing salt levels if they are not already doing so.
* In order to reduce the incidence of chest infections, it is worthwhile having a flu' jab every Autumn. Additionally, there is a different injection to prevent pneumonia which is required only once (see this webpage for more information http://www.scotland.gov.uk/library5/health/pv65-00.asp). Both are available via GP's surgeries - mention to the surgery that you have no cough reflex and are in an 'at risk' group or the surgery may say they're only available to the over 70s - which is not the case.
* As people with a high level spinal injury lose the ability to cough, they are at high risk of developing chest infections and even pneumonia. This machine simulates a natural cough and is used in Stoke Mandeville Spinal Unit to help avoid and/or clear chest infections - www.jhemerson.com/default.asp
* Apart from the obvious benefits of avoiding bladder and chest infections, this article explains the increased risk of stroke and heart attack caused by these infections - http://news.bbc.co.uk/1/hi/health/4095033.stm. Particularly when combined with the autonomic dyreflexia commonly experienced by someone with a cervical spinal injury who has an infection, these could be serious and give even more reason to guard against these common infections.
* Those with a spinal injury not uncommonly have issues with bowel management/toiletting. Sometimes, constipation is the problem, then it's diarrhoea, or gas or indigestion or acid...These may be 'just one of those things' but a potential cause of these, and some other rather more serious problems like ulcers, is a nasty stomach infection called helicobacter pylori. This is easy to diagnose and treat and getting rid of it can bring major benefits. Find out more from your GP or at - www.patient.co.uk/health/Helicobacter-Pylori-and-Stomach-Pain.htm.
* Use of a good anti-bacterial soap or shower gel such as Carex can help to reduce cross-infection.
* Many people with a spinal injury use catheters for bladder drainage. There are several types out there but this article indicates that the silver allow coated ones work best at reducing infections - www.nursingtimes.net/home/clinical-specialisms/continence/can-silver-alloy-catheters-reduce-infection-rates/5032940.article
* This from Peter Banyard - every area in the UK has a dentist who has hoists and slings in place to accommodate dental patients with special needs.
* Overheating in summer is a problem for all tetraplegics. A hat and water spray from a small spray bottle - like those used for houseplants - provides welcome and effective cooling.
* Conversely, severe low temperature in winter can cause problems. Hypothermia is a serious condition and can strike tetraplegics when least expected. Monitoring the temperature in the house/room and taking care to maintain body temperature of around 37C can improve one's general health substantially.
* Much has been written about the importance of good skin care to avoid pressure sores and we do not propose to redo it. However, a couple of small tips that anecdotal evidence indicates help. The first is to maintain a good diet of freshly prepared food - skin is, of course, made from the materials we consume and the better the materials we eat and drink, the better our body will work and skin it will make - a car runs better on good fuel...Another tip relates to the Mycil or Daktarin you may already use to treat inflammed skin, a fungal infection, in the groin area. For some reason, using the same spray on a pink mark where the skin is not broken, like the kind caused by sitting on a crease, seems to help the mark go away much faster and reduces the likelihood of it reappearing - but don't ask us why! Finally, a good moisturiser helps keeps skin in good condition - Bio-Oil works well.
* When you are in a chair, it is easy to put on weight but very hard/slow to lose it. The benefits of a good balanced diet are numerous but consider also that drinking 5 cups of tea a day, each with 2 sugars, to flush out the kidneys/bladder really piles on the calories (70 teaspoons of sugar a week...) - even if you have a good diet.
* Often the places red marks are most likely to appear are on bony areas that are hard for you, the client, to see. A good way to 'see' these areas is to get your PA to take a picture of them with a mobile phone or digital camera so they can be considered as you feel is necessary.
* It concerns us that, despite the advice we all get in hospital, such a significant number of people with a spinal injury still get pressure sores and end up spending weeks, months or even years in bed as a result. We all get the odd red mark but experience has shown these two issues as being involved in pressure sores developing:
1 new equipment or changes to existing equipment.
We advise being exceptionally careful when using new equipment or if something has changed, e.g. with shoes, wheelchairs, cushions/padding, hoist slings etc, and checking your skin all over, even under toes and more than usual, when using new equipment until time proves it can be used safely.
2 continuing to put pressure on a red mark.
We advise never continuing to apply pressure to a red mark or an area of skin-off, e.g. by sitting on it and thinking it will be OK for a bit. It ALWAYS gets worse. A quick day or so in bed at the outset is often all it takes to put it right.
Consider what happened to Christopher Reeve/Superman as the result of a pressure sore which started off as a pink mark: he died.
Please take note of these links which have much useful information on pressure sores and how to avoid them:
* A major factor delaying people leaving hospital after injury is the problem of arranging suitable housing to go to. Some people get needlessly stuck in hospital for months while others get discharged to wholly unsuitable nursing homes. At long last, there is now a third alternative - temporary adapted housing which can be used for a period of months until building work is completed and one's own home is ready for use. This option is available from two organisations:
Transhouse - www.transhouse.info
* Grants for adapting housing are available from local Community Occupational Therapists.
* If possible, attempt to arrange for an additional spare bedroom so a permanent carer can continue to stay in the house even when on off days. This facility gives the permanent carer a place of their own and has a significant and beneficial effect on encouraging permanent carers to stay longer which improves care continuity.
Managing your care package/PAs
* While working with an agency such as ORIGIN means you need not be concerned on issues such as contracts, pay rates and employment law, sections 1 (Identifying what you want from your package), 3 (Developing a working relationship) and 4 (Maintaining a balanced relationship) of this www.spinal.co.uk/page/advice-line can help with excellent advice regarding how to make your care package work well and in the way you want it to.
* What is it reasonable to ask PAs to do?" - by Brian O'Shea (C4/5)
Some people like gardening, others like washing the car. Some people are happy cleaning all day, and some people really don't like cooking very much. So what is it reasonable for me to ask of my PAs? My rule of thumb in this regard is that anything to do with my body and my personal care is non-negotiable, and everything else is open to negotiation. For example if I want to be repositioned in my wheelchair 20 times until I am sat just right, or if I want my face washed in a particular way and my hair brushed "just so", it is reasonable for me to ask that of my PA. I will not however demand that they wash the dishes in a particular way as long as they come out clean in the end!
* How to help new PAs learn your routines as quickly as possible
Try writing a detailed description of the method making up how you like to do common activities, e.g. getting up, going to bed, toileting. Give this to your PA and ensure they have it with them each time you carry out the activity. In this way, they can follow the individual stages written down until they remember them without you having to prompt them every step of the way every time. You will find that the descriptions will evolve over time to become an efficient guide which can be used by all new PAs and should, hopefully, reduce the time and effort needed to learn your way of doing things.
* As additional guidance from ORIGIN, we suggest that the 'how' your PAs carry out a particular task can sometimes be improved by discussion and drawing on new ideas and experience. For example, everyone is different and where one tall PA can reach to over the chair upholstery to do a re-position, a shorter one may need you to work together with them to develop a different way of achieving the same end.
* If your carer is from overseas and, although able to drive, they have not driven in the UK before, arranging a driving lesson or two here can be helpful.
* Should you decide to employ carers privately, it is a legal responsibility for them to have a contract of employment and it is advisable for this contract to be in writing. Having an up-to-date contract in writing can avoid all manner of difficult and perhaps costly problems. Any solicitor can draw up such a document.
* What to do if PAs want different food from that you normally buy?
The situation where PAs prefer different food from the client, e.g. unusual or more expensive, can cause irritation. An easy way to address the issue is for the client to give the PA a fixed amount to buy their food, perhaps £5 a day, which equates to around half of your normal weekly food shop bill. If the PA wants to spend any more than this, e.g. on vegetarian or organic produce, then they would pay for it themselves.
* If you spend time writing and developing a detailed job description you will reap great benefits. This is because the carers will know what is expected of them and your notes will give them a much chance of achieving the required level. We suggest that you also write a detailed 'how to' list of common tasks in your daily routines and around the house including a daily cleaning/domestic work plan.
* How long can it take to do a daily routine? – some example timescales
These are perhaps minimum times for a good C5/6 tetraplegic with no other complications and using a sliding board for transfers. NB - the routines for a higher level tetraplegic or for someone with any health problems will take a great deal longer.
Standard, non-toileting morning get-up – changing bags, checking skin, dressing, transferring to chair - 30-45 minutes
Standard, non-toileting evening get to bed – transferring to bed, undressing, checking skin, changing bags, arranging pillows – 30-45 minutes
Toileting/shower routine – transfer to shower chair, insert suppositories, digital checks as necessary, shower, dry off, transfer to bed, new drainage condom/bag, check skin, dress, transfer to chair – 2-3 hours approx.
Moving and handling
* Sliding boards have become increasingly widespread and with good reason as their correct use lessens the effort required in a transfer for both the carer and the client although the board can require training to use properly. To reduce the potential for bruising/damage to the sitting bones, padding the board helps. A layer of foam rubber clad in vinyl or leather works well. To help the movement slide properly, a sliding sheet put on top of the board is invaluable. These sheets, the boards themselves and training in their use are available at no charge via local Community Occupational Therapists. You can also buy the boards from most mobility centres or from a manufacturer such as Onward Design on 01773 852077. Sheets are available from, among many others - www.phil-e-slide-uk.com/prodrange.html. We have found that, for some reason, sliding sheets seem to work better if you turn them inside out...
* This from David Morgan. Try using silk or polyester sheets rather than cotton to ease sliding/moving/handling whilst in bed.
* This from Brenda Gregory. Moving up the bed for a tetra. Place the sliding sheet under the hips and buttocks, remove pillows from under the head [this move also works if you leave the pillows in situ], then carer stand at the bottom of the bed and push client up the bed by holding the ankles. A very high lesion may need two slide and glide sheets.
* If a carer is very tall, it is worth considering that they use a kneeling position when working at bed height. Adopting a kneeling position can reduce the need for a tall carer to bend to work at bed height, improve their posture and reduce the risk of overstrain when they are carrying out toiletting, washing, dressing and even sliding board transfer activities.
* Having one's bed/easychair at the same height as one's wheelchair aids transfers and makes your carers life much easier. These bed raisers are good and having a wide top makes them much more useable than others as they can be used on a wide variety of beds/easychairs. They also stack and are light enough to take on holiday - www.westons.com/cgi/ss000247.pl?RANDOM=NETQUOTEVAR%3ARANDOM&PAGE=SEARCH&SS=elephant&TB=A&PR=-1&GB=A&SX=0
* Moving and handling equipment is widely available to buy from local suppliers which you can find in your Yellow Pages. Westholme on 01422 260011 - www.westholme.co.uk - also supply a range of this equipment.
* Many of us are concerned about becoming ill; and worry even more about getting ill when away from home. In addition to having full travel insurance, please bear in mind that the equivalent of the NHS is available to you free of charge in Europe although charges, which can be reclaimed from your travel insurance, may be levied outside Europe -www.nhs.uk/NHSEngland/Healthcareabroad/countryguide/Pages/EEAcountries.aspx
* When travelling, planning is the key to success and an enjoyable trip. A detailed packing list that can be amended in the light of experience is very helpful. We suggest you 'hope for the best but plan for the worst' - just in case.
* When arranging a holiday, check early if your PA/carer needs a visa to travel and arrange any necessary visas early. NB - Non-Europeans and South Africans in particular need visas to travel and these can take weeks or even months to organise...
* It can be difficult finding travel insurance if you have pre-existing medical conditions like a spinal injury. One of our clients, Ed Guiton, found this company that does offer suitable insurance - http://www.staysure.co.uk/travel-insurance. Another is FISH INSURANCE on 0800 0883051 and yet others include PJ Hayman and Freedom Travel.
* If you are taking a wheelchair abroad, it is advisable to bring the commonly required spare parts, as it can be hard to find them abroad
* In France is illegal to carry any device capable of warning or informing you of the presence of speed cameras, including radar detectors and SatNav or GPS systems that list speed cameras as points of interest
* If you are planning to hire a car for which you will pay but which your PA/carer will drive, ensure that:
1 you are the named driver and then add your PA/carer is added as an extra driver. NB - you will need a valid driving licence and credit card.
2 as the main driver, your PA/carer has a valid CREDIT CARD to cover any collision damage waiver - even if you will pay for this. NB - THERE IS A CHANCE THAT IF THEY DO NOT HAVE A CREDIT CARD, YOU'LL HAVE TO USE THE OPTION ABOVE OR TAKE A TAXI AS THEY WON'T GIVE YOU A CAR...
* For those people who use hoists to transfer, travelling away from home can be rendered nigh on impossible by the difficulties in taking heavy equipment with you or finding a supplier nearby. Westholme on 01422 260011 - www.westholme.co.uk - supply the Sequoia gantry lift which is transportable and available for rental.
* For those of us who toilet using a shower chair, a folding/dismantleable version is needed to facilitate transportation. To find out about the Chair-in-a-bag, call Accessatlast on 01772 814555 or visit www.accessatlast.com/accessibility-products/mobility-shop/Commodes/83/. It costs around £300 and looks good.
* A useful website for a wide range of specialist disability travel and other equipment is - www.borringia.com.
* This from Andy Crowe (C4/6) - 'This transportable hoist really works; I advise taping the hand control during transit though!' - www.molift.com/uk/smart.htm.
* The Mo-Lift Smart hoist can be rented at - www.portablehoisthire.co.uk/
* "Have Shower, Will Travel" by Brian O'Shea (C4/5)
As a tetraplegic who uses a shower chair I'm always frustrated when travelling to find that "accessible bathroom" normally means grab rails to get in and out of the bath. In the past I have been known to resort to gathering every towel in the establishment to make a large enough absorbant floor space on which to splash around!
Before a recent trip however I bought a 4 foot children's paddling pool (Argos £4.95), a submersible pond pump (garden centre £14.95) and a short length of hose (local hardware shop £0.95), and hey presto, a portable shower. Here is how it works. The paddling pool I bought has three blow up rings. I cut the top ring off, then if I blow up the bottom ring about three-quarters full I can roll my shower chair over the ring and it "bounces" back, providing a reservoir about 1 1/2 inches high and 4 foot in diameter. My shower chair fits neatly in this reservoir. I place it alongside the bath and I can then use the hand-held shower (or if necessary just buckets of warm water from the bath/basin) to have a proper shower. While showering I place the submersible pond pump in the reservoir, attach one end of the hose to the pump and place the other end of the hose in the bath or toilet. As the water level in the reservoir rises I turn the pump on and the water is neatly pumped out of the reservoir, leaving space for more if necessary!
After the shower, enough of the water has been pumped away to allow me to roll the shower chair out of the reservoir over the three-quarters inflated rim, and any residue in the reservoir can just be emptied into the bath. So, for under £20 I have a portable roll in shower. Not bad hey?
* An easily transportable transportable ripple mattress - for use to prevent pressure problems when in bed away from home - is the Betabed B74 from Huntleigh Healthcare. The pump is about the size of a shoebox and the mattress folds up like a li-lo but works on any flat surface short of a hard floor; all normal beds are fine. They can be contacted on 01582 745700. Make sure to get the heavy duty A0PB3 bubble pad as it is much longer lasting than the others. These two items cost, together, around £175. Equipment can also be rented from Huntleigh for short or long periods - they'll even deliver/collect at the airport if you need equipment for a holiday.
* Take simple things to help you fix problems yourselves, e.g. sewing kit, screwdrivers, tape, superglue, other tools if needed, fuses, batteries, extension lead, a spare cushion cover etc. If an important piece of equipment doesn't work on arrival (as DOES happen), being able to fix it yourself can be essential.
* When booking your air tickets, confirm the airline is OK if your baggage is going to weigh over 15kg. Recently, they have become much less flexible and we advise getting written exemptions to their limits as you are carrying medical equipment.
* How to ease getting into/out of aircraft seats.
Any disabled person who has flown knows how much 'fun' it is being transferred into/out of an aircraft seat and, sadly, this may put some people off flying. One of our clients has a lifting sling of this type - www.samarit.ch (go into Nursing Aids and see the Pull-Up)- which is used very successfully by the airport moving/handling teams when transferring him. Its use avoids causing him the problem and pain of being picked up by the shoulders and knees and simplifies the whole process. THIS PRODUCT MUST NOT BE USED BY ORIGIN STAFF.
* When booking seats, take care to get a bulkhead seat as access is easier and there is more legroom.
* During the flight, ask the cabin staff in the aircraft to radio ahead to ensure your chair is by the aircraft door on landing - if not, it will often end up on a carousel in baggage reclaim going round with the suitcases...
* No-one wants to get ill at any time but particularly when on holiday. This is a good site for advice and specific local information - www.fitfortravel.scot.nhs.uk
* For free access to health services elsewhere in Europe, register for a European Health Insurance Card - www.ehic.org.uk - but also continue to get travel insurance as well!
* Wheelchairs, cushions and other mobility items are available at no charge from the local Mobility Services department which can be contacted via Social Services.
* Many people experience pressure problems on the spinal processes/back knuckle bones where these push against the chair when sitting. Many solutions exist, e.g. putting two pads either side of the spine in the upholstery, a JAY padded/rigid back and this STIMULITE tension adjustable/pressure relieving back - www.gerald-simonds.co.uk/catalog/product.php?CI_ID=205
* Many people with a spinal injury struggle to find and maintain a comfortable sitting position in a wheelchair. It sometimes seems that a wheelchair setup that maintains rearward and sideways balance in the early days later causes the top half of the body to tip forward which then means the hips slide forward or we hook onto the push handles to prevent nose-diving out forwards. This website has some interesting comments on the subject:
A client has reduced his manual wheelchair back height 2.5cm. This reduced the tipping forward problem significantly, made sitting more comfortable and he has noticed an improvement in his ability to take deep breaths too. There has been no corresponding loss of balance. Such has been the impact that he is considering a further 2.5cm reduction in back height. He concluded that 'just because my chair had been OK for years did not mean it was right for now on'.
* Cleaning rubberised high friction push rims that many tetras use can be a problem as little seems to work well. One unlikely product that does is nail varnish remover/acetone - put the liquid on a cloth and wipe the rims thoroughly to restore the grippiness.
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