This role is to support me, Lucy, a 26 year old young adult with a progressive, life-limiting illness and complex medical needs, to live at home with my family, to pursue my hobbies and interests, to live a fulfilling and active life, to be a valued member of my community, and to be as independent and as well as possible. It requires qualified nurses with active NMC registration to manage my complex and specialist care needs that keep me alive, to keep me at home and keep me as well as possible, and manage my symptoms in order for me to live a comfortable and busy life. These nurses work one-to-one with me to manage my needs at home as well as out and about in the community for my work, social activities and quality family time. You’ll support me now in living my life to the fullest, doing my work and my speaking, advocacy and activism, and other important outings, and to make precious memories, but also to support me as I continue to deteriorate and as I reach end of life, to give me a good death; to put it in perspective, I was expected to die before my 18th birthday and here I am years past that “expiry date” with a lot of living yet to do!
You get to be the nurse you’ve always wanted to be, to spend quality time with your patient and to build an ongoing relationship with the patient and their family, to have the time needed provide holistic care and support and to meet all of their needs and outcomes, to be the one to enable the patient to live their life and to achieve their dreams and goals, to have the enjoyment of caring for a patient over a period of time and not just for a fleeting admission, to feel valued and appreciated, and to have unquestionable knowledge that the care you are providing is making a difference for that patient and see the positive impact you’re having on their family.
- Be a registered nurse (adult or children’s)
- Have active NMC registration
- Have been qualified for at least 12 months
- Be happy to work within the community with a patient with complex care needs
- Be prepared to undertake all the training necessary for working on my package
- Work well as part of a team
- Be able to take direction (remembering that in this case, the patient you’re caring for is actually your employer)
- Be able to work independently and use your own initiative where necessary
- Have good communication skills
- Be respectful of others and of the environment around you; your employer, the family, other team members, and the workplace, which is our home
- Be committed to professional development and growth
- Be able to uphold my privacy and dignity
- Always uphold strictest confidentiality
- Be able to keep accurate medical records
- To physically do the job at hand; whilst I abide by equality and diversity and disability law, it is essential you are able to complete all of the tasks that form part of this job in order to keep me safe and well
- Be prepared to continue to perform specialist medical and general care procedures “on the go” wherever we may be (however we do not compromise on technique or procedure principles)
- Able to fit into working in a family home environment
- Have a sense of humour, be able to have a laugh and see the funny side of things
- Be able to work around and help look after my Assistance Dog
- Want to support a young adult to live her life to the fullest.
As part of this role you will have a number of duties relating to my health, wellbeing and other needs of which there are quite a few. These duties are set out in my care plan and are agreed amongst my multidisciplinary team of professionals and the CCG who fund my care. Training is provided in the procedures and skills necessary to meet my needs (see the “Training” section below).
Duties will include:
- Administration of Total Parenteral Nutrition (TPN) via the Hickman Line;
- Administration of various intravenous medications both bolus and infusions via the Hickman Line;
- Administration of intravenous fluids via the Hickman Line;
- Administration intravenous antibiotics, also via the Hickman Line, as needed;
- Taking blood for tests and/or cultures from the Hickman Line as needed;
- Stoma care, for both an Ileostomy and Urostomy, including emptying bags and changing them, as well as catheterising the Ileostomy stoma during obstructive episodes;
- PEG/Gastrostomy care, including emptying and changing the drainage bag and changing the dressings over the site (nothing is administered via the PEG, it is purely for drainage);
- Administration of nebulisers once or twice a day – more when needed;
- Support with coughing up secretions using a Lung Volume Recruitment Device when needed;
- Changing dressings including Hickman Line under strict aseptic conditions, PEG dressing and dressing of any other wounds or pressure areas;
- Wound care as Lucy frequently suffers skin breakdown;
- Changing the Fentanyl patch and supporting with other medication as needed;
- Pressure area checks;
- Monitoring skin and wounds to ensure no skin infections develop;
- Monitoring input and output of fluid, and which type of output it is;
- Monitoring the colour, amount and opacity of urine and level of sediment/amount of pus contained within it, and if needed, dip stick the urine;
- Monitoring for signs and symptoms of sepsis to which Lucy is particularly prone;
- Monitoring Lucy’s lines, tubes and stomas for signs of infection;
- Assessing and monitoring Lucy’s overall health and well-being
- Making clinical judgements for example around whether to give extra intravenous fluids and how much, or when to start the intravenous antibiotics kept at home when symptoms suggest it and decide whether to give 2, 4 or 6 doses over 1, 2 or 3 days;
- Making judgements about whether symptom control continues to be effective and raise this with Lucy to discuss with the palliative care team if it is agreed good symptom control is no longer being achieved;
- Monitor Lucy’s health in respect of deterioration or progression, which may include identification of current status changing to end of life;
- Hoisting to transfer into and out of wheelchair/bed;
- Supporting with postural and positioning needs/management;
- Perform and support with personal care: washing, dressing, oral hygiene etc.;
- Provide psychological and emotional support within your role;
- To support Lucy with care planning including advance care/end of life planning;
- Keep accurate medical records;
- Cleaning – keep the bedroom, bathroom and equipment clean to help reduce risk of infection;
- Support to go out and access the community and fulfil work and social commitments;
- Advocate on behalf of Lucy if Lucy is too poorly to do this for herself (but otherwise allow Lucy to advocate for herself, never withholding Lucy’s autonomy);
- Working collaboratively with Lucy’s other professionals, including the hospice, palliative medicine consultant, district nurses, physiotherapist, consultants and specialist nurses;
- Keep a check of stock levels and alert Lucy when she needs to order new supplies;
- Support with inducting other staff members when new individuals join the team.
Skills You Will Use and Develop:
(training will be provided)
- Aseptic technique
- Central line care and management
- Total Parenteral Nutrition (TPN)
- Administration of intravenous fluids and medications (including antibiotics) via central line (which includes mixing and preparing of drugs for administration)
- Taking bloods from a central line
- PEG/Gastrostomy care
- Stoma care (Ileostomy and Urostomy, including stomas catheterisation during obstructive episodes)
- Nebulisers and respiratory care
- Palliative care
- Symptom management
- Monitoring and assessing
- Dressings and wounds
- Pressure care
- Moving and handling, including postural care and positioning
- Clinical judgement
- Psychosocial support
Training is provided in various ways on my package, a mix of theory and practical, face-to-face and online, and some self-directed learning. Clinical skills, competencies, theory and knowledge, and continuing professional development are important in your role so that you gain not only the skills necessary in your role working with me, but also gain transferrable skills and qualifications. Some of my training is delivered within my home by clinical nurse educators and nurse trainers, other training is day-based training at another location, and further to this some training is online training from reputable training providers.
My clinical educator will provide training in Total Parenteral Nutrition, Central Vascular Access Devices/central lines, aseptic technique (full/surgical asepsis, not aseptic non-touch/ANTT), medication administration, taking bloods from a central line and PEG/gastrostomy care. You will also have competencies in all of the aspects below signed off by the clinical educator and myself in accordance with NHS competency guidelines.
We use full/surgical aseptic technique as opposed to the aseptic non-touch technique (ANTT), and all nurses will receive training in aseptic technique and will be expected to fulfil all aspects of full aseptic technique when doing any care or intervention relating to my line, TPN and other aspects.
You will be trained in the full care and use of central lines/CVADs as I have a double lumen Hickman Line through which my TPN, medications and fluids are administered. You will learn about all aspects of the need for a central line and all the theory and practical skills necessary to care for and use a central line. Although I have a Hickman Line, you will also learn about Peripherally Inserted Central Catheters (PICC lines) as there are times where I may end up with a PICC in addition to my Hickman Line, or instead of it for a period of time in the case of an infection in my Hickman Line. You will learn how to flush the lines, administer medications and infusions via the line, change the bionectors, change the dressing, to troubleshoot in the case of issues, and also to take bloods from the central line.
Taking Bloods From A Central Line:
You may at times need to take bloods from my Hickman Line for blood tests or cultures. This would involve getting a blood form, picking up blood bottles, taking blood from my line and then taking the bloods to the GP or hospital for testing. Training on this will teach you how to take bloods from a central line, including withdrawing and discarding sufficient blood, withdrawing sufficient blood for the tests themselves, flushing with 20mls saline using push-pause technique (to agitate any blood residue left in the line) to ensure the line won’t block, and then to change the bionector(s) on the end of the line to prevent the re-use of bionectors that may have blood caught in the valve, with all of this done under aseptic conditions.
Total Parenteral Nutrition (TPN):
I am dependent on TPN and have been since the age of 17, due to complete type 3 intestinal failure as a result of the gut condition I have, Chronic Intestinal Pseudo Obstruction. You will be trained in TPN, also known as Home Parenteral Nutrition (HPN), in the theory behind TPN, what it is and why it is needed, and then the practical steps necessary to set up and disconnect the feed using full aseptic technique.
As part of all of the above care you will have competency signed off in administering medication (bolus and infusion) via my Hickman Line, including mixing and preparing the medications, under aseptic conditions.
You will be trained in PEG (Gastrostomy) care in order to care for my PEG, which is used for constant free drainage (nothing is put into it – bar flushing if it gets blocked/stiff) but you’ll get a grounding of training about PEGs so you have transferable knowledge and skills. My PEG care involves flushing the tube if it blocks, emptying and changing the drainage bags, changing the dressing and changing the enfit connector.
This training is all about caring for someone with a life-limiting/terminal illness including palliative care, symptom control, psychosocial and spiritual support and advance care planning as well as general nursing skills including communication, person-centred care, monitoring and assessing the patients’ condition, working with other professionals and supporting the family. This training is important to me due to my life-limiting illness and complex needs but the training is also transferable knowledge and skills you can take away and use in your other roles.
- Principles of Palliative Care
- Holistic Management
- Person-Centred Care
- Symptom Management
- Assessing The Patient
- Working In Partnership
- Understanding The Dying Process
- Advance Care Planning: conversations, understanding future wishes and creating plans/fulfilling paperwork
- Psychosocial Support and Principles of Counselling For People Approaching End of Life
- Spiritual Support and Fulfilment
- Whole-Family Support
If you do not have training already and/or don’t have certificates you can provide to evidence this, then the following training will be provided:
- Moving and handling
- Infection prevention and control
- Basic life support
- Safeguarding vulnerable adults
- Lone working and personal safety
Training can be provided in stoma care, management and knowledge from the local stoma nurses who will attend my home and provide the training for my team.
I have funding for a proportion of my nurses to have training in aromatherapy massage to aid in my pain management and overall care.
Training may be provided about sepsis, how to spot the signs, accompanied by some self-directed learning and written evidence, if it is deemed necessary once the package has begun.
I endeavour to allocate funding for two staff training and bonding days per year, to get the whole team together to conduct additional training, to have social time with other staff in the team, and to work with you all to develop and improve the package, training/CPD, and to enable peer support to be given amongst staff members, as well as a drop-in session with me to discuss your employment, undertake appraisals, exchange feedback and to check-in with everyone.
I will always seek to source funding to enable ongoing CPD for my Nurses, as I want you to be able to grow and develop and to gain things from working with me. It probably won’t come from my package funds as funds are tight but I would support you to source funding and access CPD activities and courses.
Confidentiality is very important to me. It is imperative nothing is shared with anyone without my consent. This includes repeating things to other family members that I’ve said to you in confidence. Whilst I have no issue with you sharing with my mum medical information and communicating with her about things, it is imperative you always come to me first, both for matters relating to my health as well as for your employment – my mum is not your employer – I am also entitled to confidentiality and so things said or done outside of purely medical updates should not be shared with my mum or sister without my consent.
You must always maintain dialogue with me, for example around booking shifts, if you will be late, in the case of illness, and generally in terms of raising issues, suggesting changes or improvements.
Punctuality is very important, repeated lateness will not be tolerated.
You are expected to behave professionally within the home and when out and about, as your behaviour can affect people’s perceptions of me and my credibility. Whilst this is a very relaxed environment and can be quite casual at times, there is a line between the casual feel to this job and your behaviour/conduct being unprofessional, and it is important that it isn’t crossed and that professional behaviour is always maintained.
It goes without saying that you are required to meet all of the needs and outcomes and carry out all the tasks outlined in my care and support plan and your role/job description. Repeated failure or refusal to complete all the tasks necessary for my care will not be conducive to your continued employment and would be grounds for dismissal.
You will need to ensure your NMC registration never lapses. Support can be given by myself and my clinical educator in relation to your revalidation.
Flexibility in this role is vital. Shifts are not set or guaranteed and shifts may be subject to change if my plans change, but you will always be given as much advance notice of this as possible. However the flexibility also works the other way and this job is designed to be flexible to meet your personal needs and other commitments, such as other employment, childcare, family commitments, caring commitments and so on. I have deliberately made this package flexible to give my employees the flexibility they need in order to be employed by me and to get the best out of this job. That said, repeated last minute or regular shift cancellations would trigger a review of your employment.
No uniform is necessary for working with me. You are free to wear whatever you wish. However, it is good to be prepared with a change of clothes and suitable footwear for walking my Assistance Dog in all weathers, and when out and about at meetings, work functions and events I will let you know of the dress code if there is one.
You are expected to become part of the care team and work well with all members of the team, able to work collaboratively and supportively with your colleagues. This includes offering peer support to other staff members as needed, and time can be set aside to enable team bonding and peer support opportunities.
Pay is done 4 weekly (13 pay days per year). You are expected to keep accurate timesheets and to hand these in before the deadlines. The brokerage service provide us with a list of dates for timesheets due and pay days and we will share these with you. Completed timesheets are provided to me to be counter-signed and I send them off, rather than them being sent directly to the brokerage service.
Also important to me is that you enjoy your role working with me, feel valued and appreciated and have good job satisfaction. I want this to be a job people love to do, who enjoy coming to work and feel that their support is valued. So if you’re ever unhappy with anything, keep dialogue open and have a chat with me. Feedback for you is important in your role, but feedback to me as the employer is equally important for me to know what I am doing right and perhaps where I can improve in the support of my staff.
An idea nurse for me would be…..
A nurse who is able to be flexible to fit in with my commitments…
Likewise flexibility is facilitated in return. The shifts are not set shifts and there are no guaranteed hours, meaning you can pick and choose your shifts in line with your other commitments. I have a lot of events, meetings, conferences, training courses/workshops (as a student and as the trainer) and we also stay away at conferences at times, where we may need staff to go with us (sometimes mum and I go away on our own), but this would be agreed amongst us and the team, and also if we go away on holiday, there may be no shifts available for up to a week, or again we may ask some staff to go with us. This is why flexibility is important – my life is very varying, no two days or two weeks are the same, some weeks I might have 4 events or meetings, meaning 4 long days in London or Cambridge or Ipswich or wherever else it may be, other weeks I may only have 1 meeting/event (or, very rarely, no events or meetings away from home for a week), then at times when we stay away from home for an event or commitment or for a holiday; so we need flexibility from staff to work with and around my commitments and activities. Things will be worked out a month at a time, so shifts will be allocated based on my events, commitments and needs, and who is available and when.
A nurse who perhaps isn’t completely dependent on my package…
This is because I cannot guarantee shifts nor guarantee that my package will not change, and I could for example end up in hospital for long stretches without the ability to have the nurses look after me whilst inpatient (due to hospital insurance). I prefer for my nurses to have jobs or work elsewhere, for example in the NHS or with an agency, so that skills not always used in my care are maintained and to ensure that the person can still manage financially if my package was unavailable for a period of time. However, I am also keen to have people who only want part-time or flexible work, or nurses who are maybe semi-retired, or nurses who are returning to work following maternity leave or after taking time out to raise their child(ren). I will also need bank/relief nurses who are able to cover shifts as and when, if my regular team cannot fill the shifts.
A nurse who is comfortable working in our home, one-to-one with a complex patient…
Even if you’ve never worked in the community or in this type of setting before, it can be a bit daunting, but a willingness to work in this environment essential to the role. You will have a good support system around you, extensive training is provided, and questions are always welcome – I (the patient) am very competent and articulate and so you can ask me anything, at any time, about any aspect of my life and care and I can guide you with things if you are unsure. If you don’t have past experience of working in the community and/or in this type of setting, and you’re a bit unsure, you are welcome to request a shadow day with me and with one of my nurses to see what the role is like. You may also work here and then may find it’s not for you – and that’s perfectly okay. I need people to be open and honest, and know that they can talk to me about anything.
A nurse who is willing to work in partnership with me, the patient…
This is a fairly unique role for many nurses in that the patient you are providing care to, is your employer and thus the person who manages the package, oversees your role and pays the wages. Don’t be put off by this, it might not be what you’re used to but this is a collaborative, partnership role – whilst I am the employer, we have to be able to work in partnership at all times. We’re quite relaxed about things, as long as my care is done properly, duties are carried out, your role and responsibilities are fulfilled, people uphold the principles of working with me and that are outlined in your contract, and that professional boundary – which I appreciate can be a blurred line – is never overstepped. This is a team – a team between myself and individual staff members, and between the entire team of nurses and PAs – we are Team Lucy, and you need to know you are, and feel you are, part of a bigger team.
A nurse who wants to provide continuity of care…
Whilst circumstances change and things don’t always work out, I want to build a team who want to work with me long-term. This isn’t a stepping-stone job. I need people who are able to provide me continuity of care, who don’t just see this as a short-term role, who want to facilitate me to live well and have qualify of life, and also for you to have the ability to provide the care you’ve always wanted to give and to support a patient more than just for a few shifts. I also need people who are honest upfront if things are changing.
A nurse who is able to laugh and has a good sense of humour…
We have quite a dark and dry sense of humour, and the ability to laugh is really important to us. We laugh about things most people wouldn’t laugh or joke about, because sometimes that’s how we cope.
A nurse who likes dogs – or is comfortable working around them…
I have an Assistance Dog, Molly so the love of animals and/or the ability to work with a dog around is essential. Molly is a working dog and she’s able to do a variety of tasks to help me. She is kind and gentle, and loves people, and she certainly leaves an impression on everyone who comes to know her. Part of the role will also involve walking Molly, in all weathers, so being prepared to be out, sun, rain, snow or wind, is essential.
A nurse who will enjoy supporting me to life my life to the fullest…
You will be coming out with me to my meetings, conferences, charity events and so on, all over the UK (though mainly in London and the East of England); to walk Assistance Dog Molly; to go out with family and/or friends; to run errands; to do social activities; and to do other activities, such as going out taking photos, helping me to set up my cameras and lighting so I can record videos (don’t worry – appearing on camera yourself is not a requirement) as I make a lot of videos, and helping me to do my work at home, helping with paperwork, printing, filing and being a sounding board when I am undecided on something.
You will be expected to uphold and utilise the 6Cs in your role.
The 6Cs – care, compassion, competence, communication, courage and commitment – remain the value base for nursing, midwifery and care staff, and all those who provide care to patients:
Care is our core business and that of our organisations, and the care we deliver helps the individual person and improves the health of the whole community. Caring defines us and our work. People receiving care expect it to be right for them, consistently, throughout every stage of their life.
Compassion is how care is given through relationships based on empathy, respect and dignity. It can also be described as intelligent kindness, and is central to how people perceive their care.
Competence means all those in caring roles must have the ability to understand an individual’s health and social needs and the expertise, clinical and technical knowledge to deliver effective care and treatments based on research and evidence.
Communication is central to successful caring relationships and to effective team working. Listening is as important as what we say and do and essential for “no decision about me without me”. Communication is the key to a good workplace with benefits for those in our care and staff alike.
Courage enables us to do the right thing for the people we care for, to speak up when we have concerns and to have the personal strength and vision to innovate and to embrace new ways of working.
A commitment to our patients and populations is a cornerstone of what we do. We need to build on our commitment to improve the care and experience of our patients, to take action to make this vision and strategy a reality for all and meet the health, care and support challenges ahead.
Contracts will be 0 hours contracts to give both you and myself flexibility over shifts worked. This means you are contracted to the role and must fulfil the terms of your contract, but hours are not set to give flexibility to both employer and employee. This is to recognise that people may need to fit shifts around their existing job and/or want or need to be able to pick and choose shifts around personal life and commitments.
Staff will be on an initial 6 month probation upon which successful completion will lead to a reissued contract which will be a 12 month fixed term contract. Employment is reviewed annually from that point and contracts renewed based on mutual agreement. This is because my package could change and so I cannot guarantee the package beyond one year at a time.
The shifts will not be set shifts, shifts will be allocated based on availability and split amongst the team one month at a time, doing the rota a month in advance. Availability for the next month must be sent in by the 10th day of the previous month to give me time to allocate shifts.
07.00 – 15.00
15.00 – 23.00
Some days the hours may be different and the shifts split differently due to my work and other commitments.
On some days the shift may be 14 or even 16 hours to be worked depending on need, where possible the shift will be kept shorter but if at an event it may be a long shift.
Rest breaks for lunch etc are provided for, but breaks away from the home will be unpaid, and breaks need to be flexible depending on my commitments, our location (if out) and my needs.
I am also seeking bank/relief nurses who don’t want to regularly work on my package, but may be available for bank shifts to support me if I cannot staff a shift, if they are available on that day.
£26.50 per hour
£27.50 per hour
£28.00 per hour
£30.00 per hour
£35.00 per hour
Pensions are with NEST. I appreciate it would be desirable to carry over your NHS Pension but despite trying to work this out, it is not possible. I apologise for the inconvenience this causes.
Annual leave is 5.6 weeks pro rata with paid holiday hours accrued based on hours worked.
You will have to give 4 weeks written notice if you want to take time off (using accrued annual leave and/or unpaid leave) to enable me to make other arrangements.
Sick pay will be statutory sick pay from the fourth day of illness.
The package is managed via a Personal Health Budget (PHB) which is funded by my local Clinical Commissioning Group (CCG) as part of NHS Continuing Healthcare (NHS CHC), as I am fully health/NHS funded. The PHB is managed by me, with a brokerage service doing the payroll, so I am the legal employer and manage the package myself. The payroll service simply holds the money in an account on my behalf and calculates tax, national insurance and so on and pays wages and costs on my behalf, but I control what the money is spent on and when as per my needs and the outcomes agreed in my personalised care and support plan.
It is essential that you can work around a dog, as I have an Assistance Dog who will not only be present for the duration of every shift but you will support me to care for her as well.
Staff need to be able to drive as part of this role, to get to and from work safely and to drive to collect equipment, blood bottles, medication or to drop off blood or urine samples to my GP.
Mileage is not provided for journeys to and from work, but if you drive somewhere on my behalf specifically for part of your role (for example dropping specimens off at the GP or collecting medicines or supplies) then mileage will be paid at 37.5p per mile.
Ability and preparedness to drive my large wheelchair accessible van, a Peugeot Boxer, in order to support me to access the community is desirable, but not a prerequisite. If you are unsure, you would have plenty of opportunity to try driving the van outside of shifts to see if you feel comfortable and happy to drive it. Not being prepared to drive the van is not a barrier to employment in any way, but a fantastic “add-on” to the role if it’s possible.
You will not be permitted to smoke on the premises or during your shift, as cigarette smoke affects my breathing.