Terminal Illness (Provision of Palliative Care and Support for Carers)
Bills Presented – in the House of Commons on 23rd May 2018
" I beg to move,
That leave be given to bring in a Bill to require the provision of comprehensive palliative care to those with terminal illnesses, including adults over the age of 60; to require certain public bodies to co-operate with hospices in the provision of palliative care; to make provision for support for those caring for individuals with a terminal illness; and for connected purposes.
I was moved to choose the subject of palliative care for my ten-minute rule Bill following a visit to my local health and wellbeing day centre run by North London Hospice, where I heard an inspirational speech by Joy Watkins who is a patient and user of the amazing facilities there. Joy said:
“So what do I get from coming here to the Hospice? My GP and hospital doctors are excellent but they don’t have the extra time to give. What I get here is the space, time and flexibility to talk through things with experts who know about living and living with a good quality of life; help in dealing with the impact of a life threatening or terminal illness; and also the chance to meet others like me and have honest supportive conversations and encourage each other.”
Joy and some of the other patients, carers and staff are in the Gallery today. I welcome Joy and everyone.
As the population grows older and lives longer, many will develop health conditions that could become a terminal illness. Macmillan Cancer Support has estimated that by 2040, older people will account for 77% of people with a cancer diagnosis. The number of people dying of cancer is increasing and is expected to continue doing so. There is a real prospect of unprecedented pressures on the already overstretched NHS.
Palliative care needs to go hand in hand with hospital treatment and should be available for all people with advanced and progressive illnesses and life-shortening conditions. Unfortunately, the provision of palliative care is patchy at best. Even those with a terminal illness are not being identified as in need of referral for palliative care. In some regions, one in four people dying of cancer has never been referred for palliative care and has not been on a care register. For people with motor neurone disease, early access to palliative care is essential, as one third of people with motor neurone disease die within a year of diagnosis. Sufferers should be able to plan ahead for their end-of-life care and ensure that their wishes are known.
Research has shown that early referral for palliative care can improve the quality of life and lengthen it. Early referral also results in fewer admissions to hospital and helps carers by alleviating the stress and pressures they face.
It cannot be right that palliative care funding is dependent on local clinical commissioning groups, whose contributions to local hospices’ costs range as widely as 1% to 50% from region to region. The average contribution of CCGs to the costs of children’s hospices is 10%, compared with 30% for adult hospices. This week is Children’s Hospice Week, and the Rainbow Trust Children’s Charity has identified that hospices save the NHS money by freeing up hospital beds, reducing the number of missed appointments and, in the case of children with terminal illnesses, helping parents stay together by allowing them to manage their feelings better in a supportive environment. I am still staggered by the thought that many hospices survive thanks only to their own fundraising activities or the generosity of donors.
We need to have properly funded nationwide palliative care provision that is integrated with local authorities, community care providers and local NHS providers, so that there is a comprehensive and coherent way of addressing end-of-life care. This Bill will seek to provide that.
There is still a big taboo about talking about end-of-life care and there is limited understanding among the public as to what palliative care is and when it is appropriate. This is a challenge for all of us, but doctors and healthcare professionals could also benefit from training and a greater understanding of the work that hospices do and what is available from palliative care. Better communication is needed and more sensitivity and empathy are required from health professionals when discussing an end-of-life diagnosis and options such as palliative care.
One cannot underestimate the value of district nurses in providing care for the terminally ill. They build a trusting and supportive relationship with patients and their families and friends, making the patient’s last few months as comfortable and pain free as possible. Many more district nurses are needed to provide that support.
Palliative care is only part of the picture and we cannot forget the role that carers provide in supporting their loved ones at the end of their lives. We have only one chance to give decent care to each person who is diagnosed as terminally ill. No matter what age someone is when diagnosed, there is likely to be a relative or friend who goes above and beyond to unconditionally care for and support them in the last stages of their life. Hospices like North London Hospice’s health and wellbeing centre in my constituency of Enfield Southgate can play a role in identifying carers who have not realised that they have suddenly become a carer and are entitled to an assessment. Someone focusing on a person who is at the end of their life can find it tough to identify their own needs and to fully appreciate the role they have taken on.
The health and wellbeing centre works for outpatients and carers, recognising the holistic and inclusive approach that is needed. Carers face many physical and emotional challenges as they provide the essential support that their loved ones need—things like dressing them, taking them to the toilet or physically helping them move about, all while trying to preserve their loved one’s dignity. Even where there is palliative care provision, there is virtually none that is out of hours, so carers rarely get breaks at night time or at weekends. Many carers get no support or respite at all and are often stressed to breaking point as they adjust to a time when the sole focus in their life is the care of their loved one.
At a time when there is chronic underfunding in social care, there is a serious lack of high quality community care and support for carers. Carers UK estimates that as many as one in eight people are providing unpaid care and support to a family member or friend. That unpaid care is worth £132 billion each year, which is equivalent to the entire NHS budget for one year. Under section 10 of the Care Act 2014, councils in England must carry out an assessment of a carer of an adult if they may need support. However, Carers UK research shows that 25% of people who provide palliative or end-of-life care are waiting over six months for an assessment. Even when assessments have been carried out, many carers get no extra support, leading to carers suffering ill health, financial pressures, stressed relationships and feelings of loneliness and isolation. Carers need breaks, an allowance in line with jobseeker’s allowance, a right to paid leave and support from a more carer-friendly NHS, for which Hospice UK has been campaigning for some time.
It is for those reasons that I am seeking a clearer recognition from the Government of the existing contribution of carers and an understanding that without this support, the situation would become unsustainable. In tandem with that is the need for a new right to paid care leave for carers who are in work and an increase in carer’s allowance for those not in work.
Marie Curie Cancer Care has estimated that in the next 25 years an extra 100,000 people will die each year. The need to do something about this problem could not be starker. The Bill seeks to ensure that there is equal access to community palliative care services for anyone who is terminally ill; better co-operation between hospices, agencies and NHS services to join up the currently fragmented provision; and better funding for district and community nursing.
Each person who becomes terminally ill has only one chance to live well until they die, and it is unacceptable that their only chance of living well is dependent on the prioritisation of funding for their hospice from their local CCG. In all probability, when the Bill receives its Second Reading, Joy will no longer be with us, but, in her words,
“the hospice can help us live with a better quality of life. It is about living not just about dying, until we are ready and then it will be a safe place to die.”
We owe it to Joy and all current and future sufferers of terminal illnesses to make sure that we improve the provision of palliative care and make the system better and fairer.
I should mention that my right hon. Friend the Member for Enfield North (Joan Ryan), my hon. Friends the Members for Hornsey and Wood Green (Catherine West), for Weaver Vale (Mike Amesbury), for Canterbury (Rosie Duffield) and for Colne Valley (Thelma Walker), and the hon. Member for Lichfield (Michael Fabricant) also support the Bill. I commend the Bill to the House."