What if we viewed lived experience as an asset? As an asset of professional, economic,…
It is no secret that the NHS and social care have a workforce crisis on their hands. With a shortage of approx 40,000 nurses and counting as one example, it really cannot be an issue we ignore. There’s also a huge shortage of care workers (Healthcare Assistants (HCAs), Personal Assistants (PAs), auxiliary care staff; whatever they may be called in different places) both within the NHS and also in the community and in social care.
Many people with complex health needs, long term conditions and/or disabilities, are embracing personalised care and have taken control over our care packages, becoming employers of our own staff, care workers who we call Personal Assistants (PAs). This is true of social care via direct payments, joint health and social funding via Integrated Budgets, and NHS Continuing Healthcare (CHC) via Personal Health Budgets (PHBs). We take on recruiting, employing and managing our own care staff, putting us in the driving seat. This gives us choice, control, flexibility and autonomy over our lives and care. However, we are also suffering in the current workforce crisis, as recruiting and employing staff is becoming increasingly difficult, there just aren’t enough staff. When you add Brexit into the mix, you’re further reducing the pool of individuals we have available to recruit and employ both now pre-Brexit, but especially post-Brexit. Many of us currently, or will in future find ourselves needing to employ staff who come over from European Union countries, but Brexit could threaten this pool of European staff from entering, settling in or applying to remain in the UK. This is a hidden workforce crisis that no one seems to be addressing.
In this Guardian article from June 2016, David Brindle discusses the workforce crisis in social care as a result of Brexit and what this means for disabled people. In 2016 vacancy rates in the social care sector was consistently 5%, with no signs of improvement. He highlights the fact “an estimated 6% of jobs in the sector are filled by EU migrants. That may not sound much, but the vast size of the social care workforce means that this figure equates to 80,000 people in England alone.” It shows how much the U.K. care sector depends on EU Migrants, and thus how vulnerable we are if EU migrants leave the U.K. and if people from EU countries are not coming and settling in the U.K. and fulfilling such jobs. Quite simply, the social care sector would collapse. Figures from the National Minimum Dataset for Social Care, compiled by sector skills agency Skills for Care, suggest there are more than 1.3 million social care jobs in England, but this figure excludes personal assistants employed directly by people with Personal Health Budgets or social care direct payments like myself. There are no statistics for individual employers like me. I wonder how much our packages depend on EU Migrants? The quoted article also mentions the fact that care workers from within the UK are also hard to come by as anecdotally, “UK citizens are seen as reluctant to apply for roles typically paying little more than the £7.20 minimum hourly wage at age 25 or over.”
Then, you come to individuals like me who not only depend on Personal Assistants (PAs) but who also require daily nursing which is provided over a period of hours – in my case 16 hours per every 24 – the nursing workforce shortages are even more damaging. There is a reason we have nurses and not carers but how do we manage if there aren’t enough nurses, let alone specialist skilled nurses, to support people like me at home?
For a long time now, we have been up-skilling and capacity building with care workers/PAs/HCAs to enable them to manage needs typically only met by skilled nurses. One example of this is tracheostomy care, where the day-to-day care of an individual can be delegated to care workers/PAs despite it being a nursing task. This requires infrastructure and funding to train PAs and provide ongoing nursing support, competency checks, supervision, check-ups and overseeing of the individuals’ care, as well as having nursing staff who the PAs can call upon if needed for advice or for hands-on intervention. Up-skilling staff has been of huge benefit over the years as it eases the burden on services to provide nursing, as well as allowing individuals like me with complex health needs more choice and control over our lives and care in the community, but it’s an ongoing need to have nursing backup and support for these PAs, to ensure they uphold the standards and have their competency checked regularly, and to manage any situations that arise in an emergency. Not only that, but it requires having suitable and sufficient PAs who are willing to be trained in specialist skills and tasks, and to empower and give confidence both in the PAs that they can do the task but for the patient and their family too that they can feel confident and safe in the knowledge the PAs are competent and know what to do and how to handle situations that may arise and that there is always someone on hand for support.
The NHS England guide ‘Delegation of healthcare tasks to personal assistants within personal health budgets and Integrated Personal Commissioning‘ states the following:
“As a growing workforce in healthcare, PAs make an important contribution to supporting the health and wellbeing of people in the community. Where the people they support have requirements for clinical interventions, delegating some carefully considered tasks to PAs can have benefits for all involved.”
“PAs can play an important role supporting the work of the wider multidisciplinary team, but do not substitute the need for skilled, registered practitioners working in the community.”
“Delegation should be recognised as something that is a considered process and properly supported. This will help ensure that the best interests of the person are always paramount, that tasks taken on by PAs are appropriate, and that PAs are provided with relevant training and assessed as competent to perform the particular task.”
“It is therefore important that CCGs, as the responsible bodies for planning and commissioning healthcare services in their local area, put in place a clinical governance framework for delegation to PAs. This means that there should be a clearly identified local process for making decisions about what can and cannot be delegated to a PA. The process should include how training and assessment of competence will be provided, how any ongoing support and review of competence will be provided, and how ongoing clinical review of the person’s needs is maintained and by whom.”
There are some tasks for which delegation can still be controversial, and this includes one of my care needs, Total Parenteral Nutrition (TPN). It may also be referred to as Home Parenteral Nutrition (HPN) or simply as PN. I’ve been dependent on TPN since May 2011 and in order for me to come home, my mother was trained to care for my Hickman line, prepare, connect and disconnect the TPN, administer intravenous medications and change the line site dressing. I only had my mum to do it and sadly the Clinical Commissioning Group (CCG) refused to provide nursing care to give mum a break. Mum was getting pretty desperate and so the hospice offered the solution of allowing one of their carers to be trained in TPN, central lines and potentially also my intravenous medications. This seemed a viable solution. However, at every turn we were told it was not possible, even going so high as the Royal College of Nursing (RCN) and the Nursing and Midwifery Council (NMC). So, our plan failed. Interestingly, I’ve heard through others that they have had care workers trained in doing the TPN only, so I’m slightly confused as to why it wasn’t possible for me, but seemingly it is possible in other areas. My nutrition team at the time said absolutely not to any hospice carers being trained in my TPN, only nurses. I do now understand more about why tasks like this cannot always be delegated, and that is that it needs national standards to govern the delegation of tasks, as well as relying on having the local infrastructure, specialist staff, training and ongoing support, funding for this, and of course frameworks, standards and governance structures, in order for that task to be delegated to a PA safely and having the ongoing staff and support to ensure it remains safe and concerns can be raised, competency regularly checked and support input in an emergency or as needed. It makes me wonder; what is it about a task that makes it a task that can be delegated? And would delegating more clinical tasks to care workers, HCAs and PAs reduce the problems in terms of nurse shortages as care workers could provide care on certain tasks normally reserved for nurses and thus care for patients with more complex health needs? You look at the new role of Nursing Assistants and Physician Assistants and you can see there is a need for tasks to be delegated.
Delegation of tasks to PAs has benefits to both the patient and their PA(s). There are various different benefits for both parties. One benefit for the patient is being able to be cared for in the community, rather than in residential care. It means the person’s needs can be attended to in a timely manner, whenever and wherever they require them, meaning they can live their life as they choose, go out and do things (such as working, volunteering, socialising, hobbies and activities, run errands and attend meetings and events) and have a life, compared to having to wait around for a nurse to come and perform the clinical task(s) or being restricted by care hours due to the nursing needs. I was talking with a lady the other day who has requested her PAs be trained to change her suprapubic catheter, but there has been a lot of resistance to and inaction in enabling this happen, meaning every 5 weeks she may spend one or maybe more days, laid in bed, at home all day, waiting for the district nurses to come in and change the catheter, and unfortunately they may get delayed or have to postpone which means another day stuck in bed at home; they can’t give times either so you must cancel all plans for that day for the visit to happen at any time, and cancellations do happen, often late in the day, which means a day wasted and now another day sat in bed waiting for the DNs to come. To some when I explain about this make out we’re being unreasonable, but myself and the lady I was talking to both have busy, active lives and responsibilities and so taking a whole day out waiting for a visit and with the risk of that day going to waste and facing yet another lost day for the rearrangement of the cancelled visit, is actually a problem to us – it’s more than just an inconvenience – and involves cancelling or postponing things on a regular basis, and for some of us we have work commitments and other responsibilities which makes it really hard to have a whole day sat at home waiting for the visit to happen. I struggle too, my district nurses come in to do pressure area checks, despite the fact my home nurses and PAs check my pressure areas every day, and the DNs coming in to do it means trying to find a completely clear day with nothing on (a rarity) or means cancelling my plans for someone to tick a box to say my pressure areas have been checked, even though my home care team do this daily. We are very grateful and appreciative of the DN teams and have utmost respect for what they do and understand how challenging their job is with ever-increasing numbers of patients and insufficient staff, time and resources. It’s just important that there is understanding on both sides of the difficulties, the DNs in terms of time, staff and resources, and the patient with their life, commitments and responsibilities. However, in the case of the lady, the DNs could train the PAs to do the suprapubic changes, eliminating the need for a 5 weekly DN visit to change the catheter and reducing pressure on the district nurse team, whilst also facilitating the quality of life of the individual by her PAs being able to change the catheter when needed, rather than waiting around all day for a DN, and the lady can get on with her life. Making care more efficient and effective on both sides and reducing demand on the district nurses. It’s not possible for every patient and every task, and there isn’t really a solution due to how overworked and understaffed DN teams are, in an ideal world patients would be given a time for the visit and that visit be guaranteed but reality is very different, they have so many patients to see to and emergency visits, more complex patients needing more complex care and support, and visits overrunning on time and so on and so forth just mean it’s impossible to do anything about this at the moment. Thus, empowering the PAs of patients with Personal Health Budgets, Integrated Budgets and Social Care Direct Payments to take on certain tasks with the training, support, governance and competency monitoring in place to allow this, would reduce burden on overstretched services such as the district nurses.
Having tasks delegated to PAs means you have people you know well and who know you, your needs and your wishes intimately and can spot things easily and react quickly to situations or needs, and delegation equips the PAs with the clinical skills to manage those needs, complications or situations. This is important for all, having people who know you inside and out and thus know when you’re well or poorly, happy or upset and so on but it is especially important for people who are nonverbal, have communication problems/disabilities and/or have moderate to severe learning disabilities or autism, who cannot articulate their needs easily or well and rely on their care team knowing them intimately, who can spot signs without verbal cues, who may see a change in movement or facial expression that signifies pain or upset, or may see slight twitches that could signify the imminent onset of a seizure. Having PAs/care staff who know the patient inside and out effectively can be life-saving. If they had to have nurses coming in and out who may not know the patient as well or where there has been a lot of changeover of staff, they would not know these subtle signs and clues but also are not always there to see them and when something is wrong. Also, without PA delegation, in the event of an emergency or an increased need, the PA would have to call the nurse and await their arrival to act upon the situation or resolve the need for the patient. The PA having the skills to manage complex medical needs by having clinical skills and tasks taught to them would mean the PA can immediately act upon or relieve a situation or crisis or could even prevent it in the first place. This improves outcomes, empowers the PA and reduces the need for a nurse to come in and perform that clinical task, saving time and money in the process. It also has the potential to prevent or reduce use of emergency services and A&E attendance as the PA has managed the medical event at home, but may need support from community nurses, on-call consultants or out of hours GP to manage that need or to advise as to what the PA should do. Also, where admission to hospital is necessary, highly skilled PAs will speed up discharge time and make a more effective and efficient discharge from hospital, as the PAs caring for the person at home have the skills and knowledge necessary to manage the needs of the person at home and support them to continue their recovery. Another benefit is PAs could attend hospital with the patient and continue their care in hospital, giving them 1:1 skilled support in hospital which ward nurses cannot feasibly provide and who can, due to their deep understanding and knowledge of the patient and their needs and any signs of an impending acute crises or deterioration (which could be subtle), for example an upcoming seizure, and alert hospital staff to this. Other benefits to task delegation to PAs is more efficient use of NHS staff time and resources, making best use of the NHS workforce. Finally, the benefit to the actual PAs themselves. As the aforementioned guide says: “For the PA, developing new skills and being able to more fully meet the person’s needs can help make the role more rewarding and help PAs feel valued, motivated and recognised in their work. Associated training and assessment of competence can help provide evidence of their skills and knowledge and support recruitment, retention and career progression.”
Two of the case studies shared in the guidance include the following.
“I’ve found having a personal health budget has had a major impact on my life, it’s given me a lot more choice and independence in what carers I choose, what they are trained in and how they assist me. Without this it would be a lot more difficult to live out of my family home and live independently with my partner. Also to set up my own business and move ahead with my life.” Matt, personal health budget holder.
“The beauty of delegated healthcare tasks being taught to PAs is that Matt’s got so much more flexibility in his care arrangements and he can come and go as he pleases throughout the day. We can also much more efficiently use the healthcare professionals that we have got, the budgetary implications of having a qualified nurse here 24 hours a day would be impossible.”
Julia, nurse who provides tracheostomy training to Matt’s PAs.
It’s no secret that the nursing shortage is having an impact on patient care. The doctor shortage, especially in terms of doctors for certain specialties like the shortage of General Practitioners (GPs), is also having its impact. However the impact on social care is not so widely reported and known. Also little-known is the impact on patients like me with complex health needs who have specialist, primarily nursing-based needs who require complex care packages and skilled staff to be cared for in the community and the impact of the health and social care workforce crises on us.
In this post I explored whether delegating clinical tasks could ease the burden on overstretched nursing services and a shortage of nurses to provide such care, by enabling care workers to be up-skilled and to take on such tasks, and also touched on its impact on facilitating more care in the community for patients with complex health needs. Is this a feasible solution to the staff shortages and to the issues raised? We’ll just have to see.
For more information:
Click here to go to the NHS England ‘Delegation of healthcare tasks to personal assistants within personal health budgets and Integrated Personal Commissioning’ document.
Another document of interest is this NHS England Personal Health Budgets guide on PAs, delegation, training and accountability. Click here to go to that guide.