Spring 2008 Care Professionals Newsletter
Welcome to the Spring 2008 Edition of our Care Professionals Newsletter
Introduction
Our first newsletter sparked a very positive reaction and I have had several emails in response to the Intimacy article, please click here to view this article again. It appears that this is an area very much pushed to the background or if it is addressed, there is little professional help available to do so satisfactorily.
This edition we have articles on Locked-In Syndrome and a nurse's experience of moving from an NHS hospital ward environment to a community based role.
Continuing Health Care funding is turning many heads at the moment so for your information please click here for a link to a recent publication from Parliament. It lists the number of recipients of Continuing Care to the end of 2007 by PCT. I am not even going to attempt to analyse the data but it does make an interesting read!
If you have any comments on the articles in this newsletter or would like to see a subject discussed, please do not hesitate to e-mail me at kate.tamblyn@activeassistance.com
Kind regards
Kate Tamblyn, National Care Service Manager
Latest News
Due to continued growth of the company we have a new role available. Please see details below:
Nurse Manager
London and the East of England
£Excellent Package
Active Assistance is the UK's leading live-in care provider for people with a spinal cord injury and neurological disorders. Our mission is to enable our clients to live a full and active life, independently in their own home. Due to continued growth we have a vacancy to join our Care Service Management Team with responsibility for clients living in London and the East of England area.
This full time role includes responsibility for:
- Client assessments and care planning
- Care supervision
- Social Services/PCT Liaison
- Spinal injury unit presentations and networking
- Involvement with personal care assistant training and development
You should be an experienced Registered Nurse with at least 2 years post registration experience of working with people with long term conditions, ideally spinal cord injury. An SCI qualification would be highly advantageous, as would teaching and assessing qualifications. You must hold a full driving licence and own a car that is suitable for business use.
This role will be home based, although considerable time will be spent in a community setting visiting clients in their homes or Spinal Injury Centres. There is also a requirement for regular attendance at the company's head office in Sevenoaks, Kent.
If you meet the above criteria and are IT literate, well organised, an excellent communicator, independent and self-motivated, we would love to hear from you.
To be considered for the position, please send your CV to Jane Jordan, HR Manager, 5a Brewery Lane, Sevenoaks, Kent, TN13 1DF or e-mail it to jane.jordan@activeassistance.com Web Site: www.activeassistance.com (see the Management Vacancies page in the Candidates area)
Locked-In Syndrome
Locked-In Syndrome is a rare condition caused by a brain injury, stroke or bleed in the brain stem which sits at the top of the spinal cord. It results in devastating consequences. The individual is unable to move their legs, hands and arms. Facial muscles and tongue are completely paralysed resulting in something as simple as smiling and talking becoming impossible. Some individuals are unable to breathe on their own. The only voluntary movement retained is the eyes; some are able to blink while others can move them up and down.
In effect this devastating condition leaves the individual completely paralysed from head to toe but with full sensation, thinking and awareness completely intact.
Imagine just for a short time what it must be like to be locked in.
There is no cure for Locked-In Syndrome and a very poor prognosis, although some individuals have lived as long as 18 years with the condition.
The most important goal of rehabilitation is to establish a good communication system with the use of assistive technology such as alphabet boards, computers with speech and infared eye movement sensors which allow the individual to communicate more freely.
Frustrations of Locked-In Syndrome
The simplest task such as teeth cleaning can be a mission; the individual cannot open their mouth voluntarily for long periods of time and cannot hold their breath. Quite often the involuntary reaction is to bite down on the toothbrush especially if anything other than the teeth are being touched. If the individual can swallow they have to swallow the toothpaste because they cannot spit or the use of mouth suction can be beneficial.
Loss of bowel and bladder function results in wearing of pads and a catheter. The sensation of a full bladder can be painful and bowel accidents occur quite often.
Inability to swallow can result in artificial feeding via a tube into the stomach, this in turn takes away the ability to taste and feel texture. It is hard to learn to allow others to eat around you when all you would really like is a KFC.
Despite having 24 hour live in care it can be an incredibly lonely existence, spent thinking about what has happened and whether life is worth living.
Communication can be difficult and time consuming using an alphabet board made of transparent perspex and using eye gaze to indicate the letter and eventually spell the word. This takes considerable patience from both the individual and the PA. Using this system can be very frustrating as it is difficult to express emotions when spelling words. As the relationship builds, the PA will become more tuned in to what the individual needs, drawing on joint experiences to make the conversation more intersting. If the PA does not understand what the individual is trying to say, frustration can quickly turn to anger because there is no other way of explaining.
The inability to hold up your head can also have huge implications resulting in wearing cumbersome neck collars which restrict the ability to swallow and lets face it, it doesn't look good. It is important to encourage neck exercises to be completed regularly.
Individuals with Locked-In syndrome will often think it is not worth going on wishing they had not recovered.
Family and friends are important not only in their initial recovery phase but in rediscovering life and finding a purpose.
Until recent years individuals with Locked-In syndrome have remained in institutions with little or no outside stimulation. Now with specialist agencies who can provide trained live-in carers to take on extended roles such as suctioning and artificial feeding, it is perfectly reasonable for an individual to live in the community in their own home.
Angela Wicks, Lead Care Service Manager
From the Hospital Nurse to the Care Service Manager
I am a fairly new edition to the team of Care Service Managers at Active Assistance. I have spent the last twenty years of my working life, from student nurse through to many years as a staff nurse 'at the coal face', in various NHS hospitals.
Within the hospital setting the patient is at risk of losing some if not all of their independence. In fact, many hand this over as they come through the door. They literally put their trust and their lives in the hands of the hospital staff. Nurses become the patients advocate. It has always been my philosophy to encourage patients to maintain their decision making abilities, never to fear asking questions and above all, to maintain their independence as far as they possibly can throughout their hospital journey from admission to discharge.
The importance of this has struck a cord with me since I began working for Active Assistance. From the hospital ward it is impossible to know how discharge arrangements have panned out after the patient has gone home. There have been too many occasions for me to remember wondering how people are coping at home, often with a sense of foreboding. There are also the countless times I have felt that sinking feeling and sense of failure when a patient returns after their care package has broken down.
As a Care Service Manager I now see every week how well a care package can work. Of course I have moved from the realms of general nursing and 'patients' into the specialist area of spinal cord injury, various neurological diseases and 'clients' but the principle remains the same - the importance of striving to maintain independence.
Within the hospital setting the patient sadly gets little input or choice regarding who will assist them when they get home. They are unsure how it will work and how good the quality of service will be. When they get home they are restricted to waiting for carers to call, for district nurse visits, for the delivery of a meal, for a family member to finish work. They have a degree of their independence taken away. Community staff may also have a 'carer' mentality and are restricted to time slots which can often mean that the patient/client loses control over certain aspects of their life.
The Government paper 'Our Health, Our Care, Our Say' states that growing evidence shows where people are actively involved in choosing services and making decisions about the kind of treatment and care they get, the better the outcomes. It pushes for a system where people have a greater control over identifying the type of support or help they want and encourages more choice and influence over services.
So into the community I have come and I can see for myself how empowered clients can be. With the support of a specialist live-in PA (Personal Care Assistant), the client can live an independent life; they are enabled by their PA. Life goes at the client's pace, the choice is theirs! It is challenging at times but obstacles can be overcome. They continue working, travelling and take up challenges such as hand-cycling and scuba diving in exotic countries. They can fulfill their ambitions by continuing with their education and hobbies and by producing wonderful art works. For those who have an advanced disease, they can live life at home, invite friends and relatives over or attend pottery and photography classes. They can also rely on specialist care on days when they feel off colour. They maintain control over their lives, make their own choices and above all, remain independent.
It would be unfair to assume that all is achieved by PAs alone. Good local support is often essential; district nurses, specialist nurses, dieticians, speech and language therapists, social and care managers all play a huge part in promoting independence. I feel that the best outcomes are achieved when all the multidisciplines work as a team, with the client and the PA as the central link between them all.
I remain an advocate and continue to represent clients but now it is within the community multidiscipinary set up. Having seen some disappointing outcomes in the past, it is incredibly satisfying for me to see how well a care package can work and how much control clients can keep over their lives.
Samantha Cole, Care Service Manager, London and the South East
Meet Two More of our Care Service Managers
Michelle Parry RGN, Care Service Manager - Midlands and the North West
Michelle joined Active Assistance a year ago having previously worked as a Training Manager for a national Domicillary Care Provider. Her role is predominantly one of having a case load of clients who are, mainly spinally injured, but also has clients with Muscular Dystrophy, Central Core Myopathy, a child with Cerebral Palasy and has recently had a client with ME, (who has improved enough not to need care!). In supporting this case load, Michelle has worked with Allied Health professionals across her area.
Michelle is a Moving and Handling Trainer and has a keen interest in Continence Issues and has recently introduced Bowel Care Guidelines. Since qualifying 21 years ago in Hereford, Michelle has also worked as an NHS Continence Advisor before moving to work on a rehabilitation unit and in the commercial sector.
"It is great to work for a company who have such high standards and who consistantly receive such positive feedback!"
Claire Lewis RGN, Care Service Manager, South West
Claire joined Active Assistance in December 2007 and covers the South West. She has completed her Moving and Handling Trainer's course and Risk Assessment course with The Royal Society for the Prevention of Accidents (RoSPA), and is involved with training PAs.
Originally a Medical Assistance in the Royal Navy from 1994, Claire completed her registered Nurse Training with the Queen Alexandra's Royal Navy Nursing Service (QARNNS) in 2003 and took a two year post working in Neuro-surgery followed by a two year post in Neuro and General Intensive Care looking after critically ill patients. Whilst working with the QARNNS she was fortunate to work within the Spinal Injuries Centres in Sydney, Australia as well as Salisbury Spinal Centre.
Claire left the Royal Navy 18 months ago and worked in the private sector managing a nursing and domiciliary agency.
Claire has always been active with several charities; her main voluntary work is with the Back-Up Trust, where she has enjoyed skiing in Sweden and multi-activity courses in the Lake District. She also volunteers for HCPT, a charity that takes children with special needs on pilgrimage to Lourdes in France.
Events
Inter Unit Spinal Games
14th - 18th April www.wheelpower.org.uk
No Limits, Excel London
17th - 18th September www.nolimitsshow.com
ACTIVE ASSISTANCE CONTACT DETAILSOFFICE TEL: 01732 779353EMERGENCY (OUT OF HOURS) TEL: 01732 779353, select OPTION 2
Active Assistance, 5a Brewery Lane, Sevenoaks, Kent, TN13 1DF |