The Patient Advice and Liaison Service, known as PALS, has been introduced to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible.

PALS also helps the NHS to improve services by listening to what matters to patients and their loved ones and making changes, when appropriate.

In particular, PALS will:

Provide you with information about the NHS and help you with any other health-related enquiry

Help resolve concerns or problems when you are using the NHS

Provide information about the NHS complaints procedure and how to get independent help if you decide you may want to make a complaint

Provide you with information and help introduce you to agencies and support groups outside the NHS

Inform you about how you can get more involved in your own healthcare and the NHS locally

Improve the NHS by listening to your concerns, suggestions and experiences and ensuring that people who design and manage services are aware of the issues you raise

Provide an early warning system for NHS Trusts and monitoring bodies by identifying problems or gaps in services and reporting them.

Want to know more about the PALS service? The click the link here

However, the PALS representative at The Walton Centre Tony Murphy goes one step further for Chiari and Syringomyelia sufferers and their partners, carers and friends and hosts a quarterly meeting at The Centre where everyone is welcome.

The Centre covers the areas of Merseyside, Cheshire, North Wales and parts of Lancashire. So if your are covered within these areas, give Tony a call or contact him via email to ask about coming along, or if he can put you in touch with another group somewhere else?

email: tony.murphy@thewaltoncentre.nhs.uk
phone: 0151 529 6100

or write to him:

Tony Murphy PALS
The Walton Centre for Neurology and Neurosurgery NHS Turst
Lower Lane
Fazakerley
Liverpool
L9 7LJ

Soon to come........ A day in the life of Tony Murphy!

Well, here it is!

Day in the life of… Tony Murphy

1. Where are you from?
I work as the Patient Advice and Liaison Service (PALS) manager for The Walton Centre NHS Foundation Trust . This is a dedicated neuroscience hospital in Liverpool but covering a much wider geographical area including Merseyside, North Wales and the Isle of Man.

2. How long have you worked for PALS?
I have been here for nearly seven years. Patients and relatives can approach me directly – in person, by telephone or email – about their issues and concerns for me to advise them or take up their problems for them.
I was also given the freedom to develop the role. For example, I started several support groups for rare conditions where no local support existed. Key amongst these were self help groups for people affected by brain tumour, brain haemorrhage and migraine. Also, in partnership with nurse specialists I helped establish ‘newly diagnosed’ courses for people diagnosed with a high grade brain tumour; who’ve had a brain haemorrhage; and for early on set dementia.
With the spinal nurse specialist I also helped set up what we think is the first face-to-face support group in the world (!) for a severe spinal condition called Cauda Equina Syndrome.
I’ve even set up an annual national get-together for people with a very rare condition called Neuromyelitis Optica (NMO).

3. How did you get into the job?
I’ve had quite a chequered employment history. It started off in Ballistics for the Ministry of Defence, then housing research and later as an economist in electricity supply! I also worked with homeless people for 9 years. Just prior to the PALS job, I had worked for the Multiple Sclerosis Society for three years and been a volunteer for the Motor Neurone Disease Association for 10 years, so I had some insight and empathy for people with neurological conditions. I had some experience of health issues as a member of a Community Health Council for 8 years and had been an elected Councillor for 12 years, so I was used to taking up issues on people’s behalf.

4. What would you say your average day entailed?
The Walton Centre is very good but we are not perfect and some patients or their relatives come to us with allegations of bad attitude by staff; not being kept informed on the surgical wards; having to wait an hour or two due to a delayed clinic; or a cancelled operation. I take up such issues, approaching Doctors, Surgeons, matrons and managers to clarify matters and give feedback accordingly. We take the patient or relative perspective, but a lesson I learned early in post is that there are always two sides to every story.
I am often in just after 7am and there is invariably an email or two waiting for me because people look on our web site and see PALS advertised there. It may be a simple enquiry, eg about accommodation for relatives or more detailed. I always stress that we are ‘non-medical’ in PALS in reply to any communication we receive. Sometimes there are issues left over from the day before to write up in the data base. People can start ringing from 8am onwards and often say, ‘I didn’t expect anyone to answer so early!’
I can pop up to the wards early too. Recently, a female patient and her husband whom I had been supporting, was being discharged to a hospice at 9am and I called to see if everything was going to plan. Another reason is to visit folk who may not have visitors due to the distances involved in relatives travelling or who just can’t afford the cost or get off work or family commitments to do afternoon visiting.
On the telephone a man from Scotland had asked my advice about a second opinion and wanted to come down to see one of our neurologists. I gave two names to him and his GP actually rang up to confirm the details.
A parent was very upset when their loved had died suddenly at home. Although the Doctor concerned had explained matters, they still felt that there were questions unanswered. I can broker another meeting and Doctors always seem willing to explain matters further as required. (There were no suggestion of negligence here; if there were, that would be taken through more formal channels.)
As most neurological conditions are rare, I get requests for information leaflets and details of support groups all the time. I get emails from all over the world about neuro-conditions and treatments! We have an excellent Patient Information Desk stocked by a generic neurological charity called Neurosupport www.neurosupport.org.uk. They have some literature and I supplement this with ‘on-the-spot’ bespoke information. We have literature and posters promoting ASBAH of course!
We can be involved in bereavement support, especially if we have been involved with relatives beforehand. We normally sign-post people for further support as necessary.
Lighter moments come when someone whom we’ve helped in the past or who attends one of the support group meetings, pops in after their appointment to say, ‘Hello’ and give us an update on their health and rehabilitation.
I have an assistant in PALS, Julie Elwill, who works part time. If she’s working we catch up on case work, planning meetings, etc.

5. What is the best highlight of your job?
Despite being mad busy and under great pressure, I can honestly say I enjoy everything about my job. Yes, some might find it upsetting. Yes, running several support groups that meet in the evenings, including some in North Wales, is disruptive to my social life. I love the support groups; I love the case work; I love the ‘newly diagnosed’ courses. I appreciate the flexibility my manager has given me to extend the role and contribute in a variety of ways to enhancing the ‘patient and relative experience’.

6. In relation to ASBAH, how can PALS help ASBAH service users?
Where do I start?! I haven’t got space to mention everything but here are a few.
About 5 years ago, after chatting to a woman with a shunt fitted, it dawned on me that probably most of our patients with hydrocephalus do not carry a Shunt Alert card. I designed posters which are liberally spread throughout the Trust and over 500 people with a shunt have since asked us for an Application Form. A lot of my callers are those who’ve developed hydrocephalus later in life, eg as a result of a brain tumour but obviously there are those who call in and say, ‘I’ve had the same shunt since I was 3 days old and I’m 36 now!’ We give them information like ASBAH’s leaflet on Shunts and Hydrocephalus and your leaflet on Hydrocephalus itself if necessary. When they come for the Application Form, I often pick up on other issues of emotional or practical support; benefits; social services issues, etc. I help these folk where I can and normally sign-post them to the local ASBAH advisors in our area – Angela, Elizabeth and until recently Elin. (They occasionally send folk my way too!)
From this data base I asked Neil Buxton to speak to people affected by hydrocephalus on ‘Hydrocephalus and the third ventriculostomy.’ Organised jointly with ASBAH, he has done two so far. 73 people attended the first event in Liverpool and 32 attended the North Wales event. (That reminds me, I need to arrange a couple of more!)
I’ve worked closely with ASBAH advisors with a number of individuals and on a number of topics. For example, we called a joint consultation meeting when we were considering introducing a nurse specialist post for hydrocephalus. When it was agreed, Sara Kewin subsequently got that post and now, amongst other things, provides a helpline and holds nurse-led clinics for people affected by hydrocephalus. Sara also attends support group for people affected by Chiari and Syringomyelia and a new support group for Thethered Cord is being considered by another spinal nurse specialist Keren Smallwood.
I recently attended the first local meeting for people affected by Idiopathic Intracranial Hypertension .

7. Would you like to give any advice to readers or possibly some words of encouragement to pay a visit to the Walton Centre?
We are a centre of excellence for adult neurosciences and survey feedback on our care and treatment yields very high levels of satisfaction with our Doctors, nurses and other staff. Several of our neurosurgeons like Mr Paul May and Mr Connor Mallucci are household names amongst people affected by hydrocephalus. At the moment we are developing a lot of written information on our web site www.thewaltoncentre.nhs.uk – check this occasionally and see what’s new!

8. If you would like to add anymore information or comment, please feel free. Thank you.

I have learned a lot about hydrocephalus over the years and for some patients just how very difficult it is to manage. I’ll be here with my colleague Julie to provide a welcome and give help and support to anyone who comes to The Walton Centre as an Outpatient or Inpatient – and make you a cuppa.
Do not hesitate to contact me for further information about our services and how PALS may be able to help you. I can be contacted on 0151-529-6100 or tony.murphy@thewaltoncentre.nhs.uk

Other links:

Ever tried to explain to someone else how you feel day to day with Chiari?
Glossary of terms
Chiari Meetings at The Walton Centre