What if we viewed lived experience as an asset? As an asset of professional, economic,…
Recently two people got in touch with me and asked me a question about my thoughts on the future of hospices and hospice care. I spent about 2-2.5 hours thinking, brainstorming, and writing everything down in an email response. However, after I had sent this on, I had a thought; I cannot just keep this to myself and those two individuals. I want to share my thoughts with the wider world. People may not agree with everything I’ve said or may think I’m insinuating hospices don’t do certain things, but please read this with an open mind and I also want you, the reader to think about how you would answer the prompting question, shared below. Do comment and let me know what you think or what you’d add to what I’ve said. I don’t think the people that asked me the following question quite anticipated the long, detailed and thorough response they’d get from me!
Here’s the question:
“If hospices were to successfully reinvent themselves in anticipation of future needs around serious long term and progressive illness and end of life, what would they look like and what would they be doing?”
In The Future, The Hospice Would….
Be a hospice that provides a unique service to each individual – in terms of personalising every aspect of their care. Putting patients in charge of their care too – enabling them to drive what care they have and how, as far as possible, to facilitate their desired life, quality of life and outcomes. Adapting your care to each patient and their needs and desired outcomes.
I recognise hospices do this extremely well already, but I feel there’s always room for greater personalisation of the hospice support. For example, The J’s Hospice who support me personalised my care by providing carers for two days per week to care for me whilst mum was at work, it had a function in keeping mum at work and at the same time gave me carers who understood palliative care, supported me, gave me social interaction, supported me to do the things I wanted to do when I was well enough, and enabled me to have Care I required for us to manage as a family, physically, mentally, emotionally- and financially. This care was funded via my social care personal budget, then my integrated joint funded budget, then my fully Continuing Healthcare (NHS) funded Personal Health Budget. I then receive Clinical Nurse Specialist support, to support with symptom control, case management, key worker/care coordination, an advocacy role and hands on support if it was a specific care item (like taking bloods from my Hickman Line), as well as receiving counselling, social work support and complementary therapy via The J’s and social activities too via the Inspire! Group (young adult group).
In The Future, The Hospice Would Be….
A hospice that empowers and ‘trains’ patients to become more activated and enable them to manage their care most effectively, to have confidence in their abilities, to know where to turn and when, to know when they can manage and when to seek help and give them the skills in order to self-manage and become an ‘activated’ patient. Providing self-management workshops and sessions, health coaching, skills workshops, confidence-building activities etc. If we can teach patients to self-care as much as possible and give confidence in their own abilities, we will reduce their dependence on care and services and enable them to be in control of their own lives and care. Equally, having a similar service for carers – teaching them skills, empowering them, coaching them and giving them the tools and resources they need to care safely and effectively and to support their loved one to the greatest ability, and with support/backup.
In The Future, The Hospice Would Be….
A hospice that always – 100% of the time – assesses the carer’s and/or families needs along with the patients’, right from the start. Carer’s assessments are vital and these could then be shared with the local authority. Half the battle is identifying carers, since many don’t identify themselves as carers and many go under the radar, but also statutory services despite knowing the carer, failing to perform a carer’s assessment. If hospices did this for all carers and passed this onto all relevant agencies involved, hopefully the carers’ needs will be met sooner and crises averted by inputting support earlier.
In The Future, The Hospice Would Be….
A hospice that recognises that some patients with long term conditions, especially severely ill, complex patients, for whom their condition is not explicitly life-limiting, and which may or may not have a life-threatening element, but which has a great impact on their health, wellbeing and quality of life, who traditionally don’t ‘qualify’ for hospice care, could be supported through hospice outreach services that enables and empowers them, their families, their carers, and the professionals and services involved in their care, to facilitate a palliative care model in long term condition care. This is vital as so many people could benefit from a palliative approach but don’t meet the criteria for palliative care, and developing an outreach programme to support, train, upskill, empower, and facilitate a palliative model in other services would make the most tremendous difference to so many patients. Outreach services are the way forward as they can enable statutory and other existing services to have greater skills and abilities to manage “palliative” patients and ease the demand on hospices in the earlier stages of patients’ illnesses and even support them right up to the end.
In The Future, The Hospice Would Be….
A hospice that can cope with even the most complex of patients – having clinical nurse specialists and indeed HCAs/carers who can provide care for people even with the most complex and specialist of needs, to enable such patients to be supported by hospices and to have sufficient specially trained staff to manage those needs. Also, the trained staff can train fellow staff and assess competencies, so even with staff turnover, the knowledge from trained staff who train other staff who train other staff and can reassess competencies would ensure there were always staff trained in specialist procedures, such as long term ventilation and Total Parenteral Nutrition (TPN). We need more training in the adult hospice sector for very complex and specialist care needs and the procedures necessary to manage them. I say this, however, with the full recognition that you cannot train every nurse for every need. This is especially true when you come across somewhat uncommon/small population specialist needs such as TPN where many hospice and palliative care nurses may never come across a patient in their service with that need. Few hospices are equipped and staffed with people trained in doing Total Parenteral Nutrition, and due to the low population number who would have these needs, people like me extremely often cannot access inpatient respite without someone else coming in and performing the TPN procedure and IVs via a Central Line.
For me, the local adult hospice do not do TPN and since my home-care package would stop the minute I was admitted to inpatient respite, this would fall on my mother to stay with me and perform the procedures – this is what happens when I am admitted to hospital, my care package stops and ward nurses can’t give 1:1 specialist care and many can’t do TPN, Hickman lines and IVs via Hickman line and so I cannot stay in hospital without my mum staying with me and providing 1:1 care, as she is trained in all the procedures necessary to keep me alive. And to be honest, the hospitals are so grateful as they recognise they cannot meet my needs, but they won’t admit me to ICU unless I am on the edge of life, understandably, as they need those beds. So I get caught in a loophole – again. I totally recognise you cannot train every nurse for every need – but we need more “complex care” nurses in the adult nursing sector who can do TPN, central lines, tracheostomies, invasive and non-invasive ventilation, mitrofanoff catheterisation, suprapubic catheter (changes), and so on.
Following on from the above, a future Hospice would be….
A hospice that may not be able to provide complex/specialist care 24/7, but that supports carers and employed staff or agency staff that know and work with the individual at home, to also be able to come into the hospice with them and support them, to facilitate their ability to receive specialist hospice care without being limited by a lack of specialist skilled staff. Working with individuals, CCGs, agencies etc. to reach a contractural situation where an individual patient with their own package can be supported by their own staff within the hospice, to enable them to stay even when the hospice can’t meet (or fully meet) their needs due to a lack of suitably trained staff, which is legally binding, safe and accounted for. A way round this may be developing specialist contracts with the CCG/Local authority, the agency (or individual in the case of individual employers with direct payments/PBs/PHBs) and the hospice to allow this to be enacted on an “as required” basis – I know this has been done in hospitals with staff from home packages being allowed to care for patients within the hospital and at times special legal arrangements have had to be made to accommodate this.
In The Future, The Hospice Would…
Do more outreach work supporting the training and continuing professional development of nurses, care staff and allied professionals from statutory services (in hospital, in primary care, in the community and also social care). This would include work around upskilling of staff and delegation of tasks, in terms of upskilling statutory staff in palliative and end of life care, and then being able to delegate more tasks to such services as a result, especially early in the patient’s’ course of illness but even to enable statutory services to support from diagnosis to death. Just to try and ensure you reach all patients who need palliative care without overloading hospices and palliative care services but also to integrate care better and provide seamless transitions of care and maximum care quality, efficacy and efficiency. A few months ago I was at a regional action group meeting where revitalise, a disabled person’s holiday provider with various centres, gave a presentation and they explained they have been supported by the hospice and palliative care sector to take on more palliative care patients and have even handled end of life situations, to the extent that some patients have been specifying they wanted to spend the ends of their lives at revitalise as they know they’ll be supported well and be in a place they feel comfortable, safe and happy, as they would in a hospice setting. This is a new phenomena and a deviation of services for revitalise who are primarily a short breaks/respite and holiday service. What a fantastic example of hospices supporting other services to upskill and be able to provide that care and patients’ having another option for end of life care. I know this is done already, but I feel it could be improved and more creative and innovative ways of doing so could be utilised. An outreach programme would achieve this – similarly to what I mentioned above about enabling a palliative approach to long term conditions, having an outreach service which can go out to statutory and other services and upskill and support them to enable them to care for “palliative” patients and ease the load on hospices by facilitating earlier and more widespread support in existing and available services without every patient having to receive this directly from the hospice.
In The Future, The Hospice Would Be….
A hospice that can provide more emergency care, to prevent palliative patients ending up in hospital unnecessarily. Yes, sometimes we need to be in hospital, but other times, we could be managed ‘half way’, at home with care or in a hospice, and would be far more preferable, less disrupting and less distressing than ending up on a hospital ward.
In The Future, The Hospice Would….
Understand the ‘new’ population of young adults just like me, who shouldn’t have survived through childhood to adulthood, and are now caught in a loophole between the children’s hospices and palliative care services and their broader remit and longer duration of care, and the more end of life/last year or two of life focus of adult hospices. For people like me, I will likely never know when my condition becomes terminal, when I am getting to my last year of life, and it could easily become imminently terminal at extremely short notice. I am fortunate that we have The J’s Hospice in our area – but they aren’t 24/7 and don’t provide much hands-on nursing care due to their own limitations, and my needs are nursing based. I am fortunate I have a package of care with 16 hours with an ITU nurse – but what about the other 8 hours if I needed round the clock nursing? And my CCG are notoriously backwards, slow and difficult in securing care, even with the fast-track service. I am fortunate to live within the catchment of a young adult hospice-at-home service, but that service has its limitations, has no building and cannot provide inpatient, round the clock or specialist hands-on nursing (they can do visits and do things like access a port, flush a Hickman/port or change a gastrostomy button, but couldn’t do a ‘shift’ of nursing to support me). Adult hospices need to be more open to the young adult population and that although we don’t traditionally fit your remit, to support us as far as possible – even if this is only to ensure we are known to the hospice and even though we may not immediately receive regular hands-on care, perhaps we could be referred/transitioned to the adult hospice and have had assessments, have a care plan with you and perhaps annual check-ins, so that if we became terminal we could immediately receive support, rather than wait until we are terminal and then have all the faff of referring, care planning and getting to know everyone. That is one way round it which may not give young adults immediate access to adult hospices, but may be a work-around solution to ensure we can access the hospice whenever we become fully eligible and then whenever we need it.
In The Future, The Hospice Would….
Provide more hospice-at-home services, including hands-on nursing hours. This was always our problem – not only could I not access inpatient respite* but I also couldn’t access nursing at home as the hospice-at-home and community nursing teams couldn’t do TPN and IVs via central line so mum was literally on her own. We tried to get one of my J’s hospice carers trained in TPN and IVs, it went all the way to the NMC & RCN, but they said no, a paid carer couldn’t do it. So once again, mum was left to manage, despite nearly being at breaking point. Then she developed a brain tumour. With no one able to do the nursing care other than mum, and only having some hours of carer support on my Personal Health Budget, I was stuck and the CCG told me I would be placed in a nursing home (an elderly nursing home, where I would find I wouldn’t be allowed to visit mum, I wouldn’t be able to go out, I wouldn’t be able to have my Assistance Dog Molly with me nor would I be able to see her at all, I wouldn’t be able to do my voluntary/advocacy work and I wouldn’t even be allowed to attend my medically vital hospital appointments – I was told these were all unnecessary luxuries – plus they never actually found a home who could provide 1:1 nursing, either) and it took us fighting, with my hospice nurse and a friend of a friend who stepped in to be my advocate (she is a trained advocate, but usually for learning disabilities) to secure the 24 hour package of care I have now. However, I was only granted 6 weeks care. Mum sadly suffered a brain haemorrhage and then a stroke, and later developed epilepsy, so the package had to continue – again, I was told my only option was a nursing home, but we won that fight. She now provides the double-up care alongside the nurse during the day. Over the years, there has been no community based nursing that can provide for my needs. Even now with the agency, when the agency have failed to provide a nurse, I am simply told to call 999 and go to hospital. Fortunately mum has made a miraculous recovery – she wasn’t supposed to survive, let alone have made almost a full recovery minus some little issues – and once again, it falls to her if I don’t have a nurse or if anything goes wrong overnight whilst I don’t have nursing cover – so even though I now finally have a somewhat, though not fully fit-for-purpose, care package with 16 hours nursing, my mum still can’t go on holiday or anything as she has to be here in case anything goes wrong with my line overnight or if (when) I am left without care.
*For a time I did manage to secure funding and a location for inpatient respite, it was 3.5 hours away and not feasible to do as the stress of mum of packing me up, organising everything, sorting deliveries, getting everything prepared, driving me down there, handing over – then wanting to stay and not be 3.5 hours away, not wanting to drive all that way home and then 2-3 days later drive 3.5 hours again to pick me up – it wasn’t sustainable and for mum, was more of a burden than just doing the care.
In The Future, There Would Be….
Better joined-up care with all existing services – this is not necessarily a burden I place solely on hospices and palliative care services. We need patients like me to have hospice care and all other care included in our care packages. We need to be able to build care packages for patients like me with funding for and inclusion of ALL services in that area that benefit the patient. Truly holistic care packages. I.e., for me, my 24/7 care is one package funded through CHC. The hospice is another. NHS/adult hospice palliative care team is another (the palliative care consultant I have is joint-funded and jointly based at both FairHavens Hospice and Southend Hospital). District/community nurses. Community physio, OT and respiratory team (albeit I only see them intermittently). Social care. And Ideally for me, hospital at home team who could act to keep me at home rather than in hospital, where possible, when a crisis or acute situation develops. We need to start using care packages to join together ALL of these services into one package of care. This would make it easy on all the services as each would have their place in the individuals’ care and there’d be cross-agency working and the patient would also know where everyone fitted in, who to contact when, etc. Thus, the likelihood of keeping the person at home for as long as possible and at end of life, to be in the place of their choosing would be far more successful, care outcomes would be reached far more and far better, the patient would be happier and better supported, and the ‘burden’ (though I hate that word) of care shared amongst all agencies/organisations on board with clear roles, places and outcomes. Personalised care and integrated personal commissioning, multi-agency/joint working, integrated care, personalised commissioning and person-centred and holistic care. Also, however, this could increase funding to adult hospices if patients like me could fund hospice care out of our Personal Health Budgets and social care personal budgets. This is used effectively in children’s hospices but I feel could be used more in adult hospices. Hospices that as part of their first contact, assess people for Continuing Healthcare and/or social care eligibility to support them to gain a package of care, through which the patient could commission their own hospice care, opening up another funding stream for hospices.
In The Future, The Hospice Would Have….
The ability to adapt and evolve and to find creative ways of meeting needs. Obviously this is a given, and is done, but it’s really important a culture that facilitates – and a service structure that enables – services to to adapt, evolve, change and innovate over the years. And a service that can be customised for each patient. Hospices do this so well already though. But we need more “outside the box” thinking – getting “more bang for your buck” and finding new and creative ways of managing things. I will tell you a little story, not relevant to hospice care but shows what outside the box thinking can achieve.
I know someone, he’s 81, has been disabled from birth but about 5 years ago his neck vertebrae collapsed and he lost full use of his right arm (his left arm was already affected by his cerebral palsy). Initially he went into a nursing home but then managed to get home with a Continuing Healthcare package with carers visiting to care for him. However, he made a fantastic recovery and soon no longer qualified for CHC. Furthermore, social care also wouldn’t support him unless he used up all the equity in his bungalow to fund his care or sold his bungalow and moved into a residential home. Or he could pay for care himself – but this was too expensive. So, in the end, he now has a lady and her husband living in his bungalow with him. M supports J most days, albeit she has days off and J pays a PA to support himself on those days, but J can have the care he needs, in his home, for free, as M and her husband live there rent free and bills paid in return for her providing J’s care. So now J has the care he needs, the life he wants to live, flexibility, freedom, control and autonomy, and M and her husband have a home and can live without worrying each month. M’s husband is also chronically unwell, so M can also support her husband as well as J.
What a great solution – and a great example of personalised care and thinking outside the box. We need more of this!
In The Future, The Hospice Would Be….
A hospice that enables patients to live full lives for as long as possible, by offering activities, creating social groups, partnering with other charities and organisations to enable patients to fulfil “bucket list” items and to access other, existing services
In The Future, The Hospice Would Be….
A hospice that doesn’t just do end of life plans, it does “living life” plans too – with care plans and support that recognises and supports them to be themselves and live the life they want to lead. Getting patients to really think about what matters to them, what dreams and goals they have, what things they want to do, achieve and experience, what will make their end of life enjoyable, what will give them pleasure, what they would regret not doing before they die, and helping them create an end of life ‘journey’ that is fulfilling, enjoyable and does everything they want to do and achieve and gives them experiences and memories that no one, no illness can take away from them and their loved ones. To enable them to live and do everything they want to do (within the limitations of their illness) before they die. And if possible, support them to achieve and experience them.
Continue to invest in volunteers as they do already so very well. So much more support is needed from volunteers and continuing to invest in volunteers is one of the single best biggest things.
Where volunteers can gain accredited qualifications through supporting the hospice – giving back
Hospices that become community hubs/centres – having spaces where the community can enter and meet up – supporting the hospice through paying for drinks, food in the hospice and/or renting out community space they want to use. They may even, then becoming volunteers (hopefully) as they will feel more ‘part of’ their local hospice. They need to become the focal point of the community. A place where people of all walks of life can meet up, get to know each other and give back to their local hospice and create a sense of communal ownership of ‘their’ hospice.
A hospice that is highly visible in the community – getting out there as much as possible. Ensuring people know hospices are about helping people to live, and not just supporting them through the dying process.
A hospice that empowers and supports patients to become speakers, to volunteer if well enough, to participate in the hospice activities. Be this speaking, media work, writing, volunteering, sitting as a patient representative on committees and boards, and more. Giving patients a purpose and a way to give back however they can – giving meaning to their experiences, and even their death. My hospice nurse got me started in my voluntary work and I live an incredible life because she asked me “what do you want to do now?” and then when I said “make a difference”, she found opportunities for me and supported me and over the last 5 years, I’ve built an incredible, meaningful, purposeful and impactful life – and have an MBE, awarded in 2016, an honorary masters awarded in September 2018 and being named as one of Britain’s most influential disabled people in the Disability Power 100 List 2018. All by the age of 25. Hospice care has given me that. And they fought for and facilitated the quality of life and symptom control that allows me to life my life and do these things, which is vital for me to be able to do what I do.
So, kudos to the people who have got this far. I hope my ideas have given some food for thought, although I appreciate some or even many of these are done well now, whether across the board or certain aspects in isolated hospices/areas. These are just my thoughts for the future of hospices and palliative care services. Do let me know what you think, comment below, share it on your social media, feel free to use my words and share my ideas (though please do credit me) or anything that may take your fancy. Equally if you would like to talk to me about any of my thoughts/ideas or anything related to my experiences of my work, or would like to book me for a speech or commission me to write an article or blog, or invite me to an event or meeting, do get in touch.
Just to recap on the points above:
- Personalises the care, support and services the patient receives to their exact needs, wishes and outcomes, and putting patients in control
- Training, supporting and empowering patients to become activated and to be able to self-manage as far as possible – skills workshops, self-management courses, health and life coaching and confidence building
- Always – 100% of the time – assesses the needs of carer’s and family members of patients. Doing carer’s assessments and sharing this with the local authority and other statutory bodies
- A hospice that can cope with even the most complex of patients – training more staff in very complex care procedures, so that patients like me with specialist needs can access inpatient respite, symptom control and end of life care
- Patients’ own care package staff being able to care for them in the hospice, opening up inpatient hospice care to patients with very complex, specialist needs as their competent, trained staff who support them at home and know the patient and their needs intimately, can provide that specialist care within the hospice if the hospice does not have sufficient staff trained in those needs. Reaching legal/contractural agreements to allow this to happen.
- Outreach services that trains up other statutory, voluntary and other services to enable them to provide palliative care, to support “palliative” patients and to thus ease the load on hospices themselves. Upskilling organisations and their staff, providing outreach support, CPD, ongoing training and education, and empowering them to support patients with life-limiting conditions throughout their life and, maybe even at end of life. Also upskilling and supporting the home-care teams, agencies and care staff supporting patients, enabling them to provide a palliative care approach and skilled support to the individual they’re looking after, further easing the load on hospices
- Hospices able to provide more emergency care to bridge the gap between home and hospital
- Understand ‘new’ and unique populations needing hospice care, especially young adults, and even where you cannot provide ongoing care to these populations as they don’t yet meet the criteria, having them assessed, having care plans and being known to the hospice so that once they are eligible and/or really need the support, they can access that care almost straight away, rather than only referring, care planning and so on once they are urgently in need of your support and meet your criteria.
- More hospice-at-home based services, especially hands-on clinical/nursing care
- Better joined-up care of existing services – coproduction in care and support planning and care packages being inclusive of ALL services. To share the load and create more effective, joined up packages of care. Also CCGs and Local Authorities budgeting for hospices in individual care packages, through Personal Health Budgets, Personal Budgets, Direct Payments etc. enabling patients to ‘buy in’ their own hospice care and fund it out of their care package, creating additional funding streams for hospices. For a while my CCG allowed me to fund The J’s Hospice carer support via my Personal Health Budget and the local authority had previously allowed me to fund The J’s via my social care Personal Budget.
- Supporting more individuals to get ongoing care packages
- Hospices and services that have a culture that facilitates – and a service structure that enables – services to to adapt, evolve, change and innovate over the years
- More “outside the box” thinking and finding creative solutions – we don’t have to do things “the normal way” all the time, really think creatively and there are so many solutions out there if we can get our brains outside the normal thinking and the restricted frame of mind
- Offering more social, fun activities, partnering with other organisations and services, making connections – providing opportunities for living, fun, enjoyment and letting their hair down and making new friends and social groups
- Hospices that don’t just do end of life plans, they do “living life [to the full]” plans too. Helping patients plan out their end of life, think about what they want to do and achieve, what they want to experience, to think about things they might regret not doing and whether they can do them to reduce regrets, do things that give them memories that nothing can take away from them and their families – enable them to live and do everything they want to do (within the limitations of their illness) before they die. And if possible, support them to achieve and experience them.
- Supporting with care packages – such a huge issue – especially Continuing healthcare which is a minefield and a patient-unfriendly process [I get a lot of people referred to me for support with CHC – and I can’t help everyone]. So if hospices could continue, or begin, to support with this, that’d be amazing for so many individuals to get the day to day, ongoing care they require and the funding to enable this.
- Continue to invest in volunteers
- Make hospices into community hubs, bring the community into the hospice, supporting their hospice, give a sense of communal ownership – the hospice is “our” local hospice, not “the” local hospice
- Hospices to be more visible – which will help with funding, understanding, breaking barriers, removing taboos and correcting misconceptions, gaining volunteers, and creating a sense of communal ownership of “our” hospice
- Empowering and supporting patients to get involved in the hospice and volunteer in ways they can, if desired, such as speaking, media, writing, attending a/some meetings, sitting on boards or committees, to have a purpose in life and give meaning to their experiences – and maybe even give meaning to their impending death. You cannot underestimate the positive impact of this.
Thank you for reading. Do comment and share your thoughts.