Summary
Wendy used to work as a hospice nurse. She is now receiving support as an outpatient at Martlets and explains how specialist hospice care can make all the difference in managing MND.
“Years ago, I worked as a nurse for Coppercliff Hospice in Brighton, which then merged with the Tarner Home to form Martlets in 1997. So I’ve experienced Martlets and hospice care both as a nurse and now as a patient. Martlets has evolved significantly since I worked there, but the compassionate ethos is still the same and the care is exceptional. I always found it challenging working in palliative care but it also felt like such a privilege to care for someone at the end of their life. Now I’m on this side of the fence, I can appreciate how one can become so dependent on the care that is given and on the confidence and integrity of those doing the caring. I have so much trust in the people caring for me at Martlets and that is so important.
Martlets and my MND journey
This MND journey is such a difficult one to explain because none of us who have the illness experience it exactly the same way. There’s not necessarily a pattern of how it’s going to be and the symptoms can be specific to each individual. I’m very fortunate that two years on from my diagnosis I can still talk, because not everyone with MND can. I’ve lost my mobility, but I can talk, eat, and still use my hands, whereas for a lot of people they don’t get this far. I feel so grateful that Martlets and my medical team are supporting me to stay as well as I can for as long as I can. Whatever my needs are, I’ve only got to pick up the phone to Martlets’ advice hub, which is open 24 hours, and they are on it straight away.
There will be challenging times ahead when my symptoms will increase and maybe I won’t be able to speak, but the continuity of care I’m getting from Martlets is so reassuring. They take the time to really know me as a person rather than just a patient and to understand what I want as my care needs increase. Trusting in that gives me the confidence to keep going. I know they’ll be there and respect my wishes when things get more difficult. I was the first MND outpatient to be shown around the new Martlets building when it opened and it feels like such a privilege to have access to the new facilities.
It can be a scary road with this illness, but at Martlets they’ve made me realise there is always hope; that they will always fight my corner and that I am not alone in this. I want people with MND and other life-limiting illnesses to know that there’s still life to be lived after you get a devastating diagnosis. There are still opportunities to find that joy wherever you can; you may just have to plan it in a different way in terms of access and the practicalities of getting out and about. Martlets can help you see the positives when things feel negative; they can get you back on track and offer that hope and expertise that makes all the difference.
MND clinic, Martlets
Providing expert care for MND at home
These days, with services stretched, getting hold of your GP and setting up a care plan can be quite a difficult process, so having a direct line to the Martlets hub is essential and a service I really value. A couple of weeks ago, I was really poorly and the clinical nurse specialists (CNS) at Martlets were amazing. I was able to contact them to set the ball rolling to get my GP and other medical clinicians involved with my case. As soon as I was referred to Martlets the wheels started turning and they got everything sorted out for me. As our bungalow is on a hill and difficult for me to get in and out of, the CNS team visit me regularly here at home. It’s so reassuring to know they are at the end of the phone and can come out if I have any problems.
Martlets’ rehab team have also visited and sorted out mobility aids and so on which has made such a difference. They have pulled out the stops on lots of things, getting equipment and just being there for my mobility needs at home. If I need extra help, they respond immediately and make it happen.
Mythbusting hospice care
The word ‘hospice’ can be a little bit scary sometimes and I think ‘terminal’ is also quite a difficult one for some people. I prefer ‘life-limiting’ when it’s being used with patients because many of us still have plenty of life left to life; we’re not in the final terminal stage yet. It’s important to get across to people that hospice care isn’t only about support for those who are dying. It’s about supporting people to live life as well as they can while they can. People think you just go to a hospice to die and it’s all gloom and doom, but it’s not like that at all. Martlets is actually a peaceful, light and bright uplifting place.
A while ago, my husband Don and I were invited to visit Martlets to look around the new facilities. Even though I worked for the hospice for many years, Don had never been there or experienced anything to do with hospice care so he was astounded by the place. He was used to visiting hospitals with overflowing wards and patients left on beds in corridors and lots of noise. So he was amazed to discover that all the rooms are ensuite and open on to the gardens and that it felt spacious and peaceful. He didn’t realise that people often go in for respite care and symptom management and then return home again.
I’d say to anyone, visit Martlets if you can because it’ll give you an insight into what hospice care is really all about and a taster of how welcoming, comfortable and professional it is. You’ve got a doctor on call, you’ve got a great nursing team – everything’s there. If there’s a crisis and you need urgent care, it’s really difficult to get help unless you phone an ambulance, whereas at Martlets you’ve got a backup team you will act immediately. And it’s not just care at the hospice itself, it’s specialist support in your own home. Around 80% of the care Martlets provides is actually to people like me out in the local community, and they support people to live independently at home for as long as possible. You feel confident; you feel reassured. If you have a life-limiting illness, it’s the best place that you could possibly engage with for care and support.”
Dr Rishma Pau
Dr Rishma Pau is a consultant in palliative medicine and medical lead for MND at Martlets. She has played a key role in developing our outpatient services for patients with MND:
“Supporting our MND patients is something we are passionate about at Martlets. It’s exciting, because when we were designing the outpatient department, we did it with MND patients in mind, so one of the rooms is specifically designed for patients with limited mobility and for those who would benefit from seeing a few members of the multidisciplinary team in one clinic. The waiting room has also been considered to allow for patients with mobility aids such as large wheelchairs to access the room. We also continue to look after our MND patients in their own homes, care homes and on Martlets’ inpatient unit. We often get to know our patients and their families well so we can continue to provide care that is right for them at the right time. We are excited to continue developing our outpatient services for all of our patients.”
For more information about Martlets’ patient services please call 01273 273400.
Updated: 13/04/26