west meads patient experience blog

The mood management course consisted of an Introductory meeting with all the prospective applicants who had been recommended by their GPs.

Then, there were ten,weekly two hour sessions followed by a final session three months later to find how helpful the course had been to all the participants. The first two hour session was attended by 23 people with all sorts of problems. Some were keen to attend to get some help with anxiety or depression or both. Some were nervous about attending and some said that it would not help them and never appeared again!

There were about 18 people regularily attending the sessions and there were five counsellors, all of whom were extremely kind and understanding.They always greeted everyone and offered refreshments to make it very welcoming.

Name labels were worn with amusement and everyone was asked what theur mood was as a percentage. Work sheets were given out every time with strategies to help with various problems. Schemes were written on the board and suggestions were received from the group.

Everyone had the chance to speak about their problems if they wishes to and gradually over the weeks more people talked about their particular problems. there were tears and there was laughter too. friendships were formed among the group members.

The main benefit apart from all the strategies and worksheets was that everyone found that they were not alone with their problems which made everyone feel much better.

For the last two sessions before the end of the course the group was splt into two separate sections for depression and anxiety , bit all got together for the last few minutes to see how everyone had progressed.

All in all it was a very worthwhile and well constructed course with professional counsellors and well planned strategies to help with mood control in various ways. I am sure that eveyone benefitted from the course , all they were all very appeciative of the help that they had been given.

Note ; The mood managment course is part of the mental health services provided by West Sussex PCT. Patients can be referred to these courses by their GP. For more information about mental health services click here

The Head forward website also has infomation about mental health /wellbeing support in West Sussex region

Submitted by LK. Author remains anonymous

As a full time carer,many of the problems arising seemed an insurmountable and escalating task. However, my GPs encouraged me to go on to their official carers list and also that of the West Sussex County Council. Within a few days, a West Sussex Carer’s information book arrived. How it changed my life!!

I am truly amazed at , and very grateful for, the vast amount of help and support available through the Carer’s Support Service, Social Services, and Occupational therapy.

A call to Social Services soon solved the night time toilet problems and, following a visit from Occupational Therapy Services a perching stool for washing at the basin and a chair lift for bathing was supplied.

Meetings organised by the Carer’s support service are very informative and interesting. Opportunity is given to raise questions and one may also have time to talk to others with similar problems.

At one of these meetings I was told about the Arun Lifeline which enables one to call for help in an emergency at any time of the day or night. Also of great value is the Carer’s alert card one carries when out, ensuring cover for my husband should an accident happen to me whilst out shopping etc.

It is reasurring to know that one is able to call on the caring service offered by West Sussex Crossroads who will arrange emergency cover for 48 hrs ( 72hrs at weekends) should the need arise, thus giving family time to arrange alternative help as necessary

Knowing all these services are available has greatly helped me in my caring role,making this demanding task much more manageable

My grateful thanks to everyone

to contact the GP carer’s service visit the  west sussex carer’s website

The team can be contacted on this e- mail address cdwgpp@carerssupportservice.org.uk 

Submitted by LK. Author prefers to remain anonymous

My life changed on September 25th 2005. I went into St Richard’s Hospital for the removal of a lump on my parotid gland. Unfortunately I suffered continual pain following the surgery and am only now beginning to realise the long term implications that lie before me. Due to complications, I have also had a further 2 surgeries related to my original surgery in 2007 and 2009.

Ill health was alien to me, and so I thought for a period of time that pain was normal and that it would eventually go but unfortunately for me it didn’t. I was unprepared for the long term pain which I now know is labelled chronic pain by the medical world.

I have neuropathic facial pain in the left side of my neck and throat which extends upward and down the left side of my face and head. The whole area is ultra sensitive to touch ( called allodynia) I have to be careful swallowing, talking for prolonged periods, moving my head ( especially bending over and side to side) I also have cluster migraines which are debilatating, pain behind my left ear constantly which I cannot touch because it is in my head. Lying flat causes pressure in my head ( that’s sunbathing out for me!) so I sleep with 5 pillows. I also have problems with my body temperature. I am either abnormally cold or hot regardless of the weather,

I will not list my medications as they are too numerous. I dont like even using their names because I dont want them to be part of my life even though they are. I still struggle with accepting my situation and my pain .

Long term persistant pain is relentless and mocking. It has changed me when I don’t want to be changed and it has placed a restriction on my freindships, family,work and social life. For me now , the emphasis has to be on pain management and not always looking for my old life back. I have to find some kind of compromise between the present and the future so that I can have some quality of life by managing my pain.

Eventually , my GP made sure I was included in a local course called the Expert patient Programme ( EPP) which was run in Bognor by volunteers ( who also have a chronic health condition) It was over a period of six weeks, just one afternoon a week.

The EPP course is designed to help you to become an expert patient by becaoming an active self- manager of your health condition. Although it sounds quite ‘boardroom’ it is not. It is an informal way to meet other people with chronic pain and other illnesses and to be helped by trained volunteers who have similar problems.

The idea is to promote self help action plans which are designed to help, such as communication skills between doctor and patient, exercise tips, positive thinking and self talk, coping with flare ups and set backs, assertive training and many other problems which although simple can be a huge obstacle for those in constant pain.

On the first session I was given a very thick book. On the front cover in small print at the bottom are the words ‘from patient to person’. Personally I think that line should be much bolder because it summed up the course for me. It manages to give me a nudge in the right direction and also to meet other folk. All 6 of us on the course had different areas of pain and different diagnoses but we all shared the same emotions such as anger, frustration, depression , tiredness and isolation. All of these feelings are recognised and discussed in a helpful way in the handbook which is very thick and full of amazing tips and helpful advice.

The course does not offer a wonder cure. It simply offers help to folk in chronic pain to become people again. I think that because I am in constant pain I must be stronger than before but I don’t but I dont know what to do with myself, at times I am even afraid of myself because of the pain. Faced with this I have found the manual is a good book to pick up and read whether you are having a good or a bad day because there is there is so much which is relevant and helpful to folk in constant pain.

Anybody who suffers chronic pain should not hide away. It is essential that they receive the same standard of care as anyone else; there is help out there. I suggest approaching your GP for more information or else contact Karen Aylmore EPP manager West Sussex PCT,The Annex, Horsham Hospital; tel – 01403 223292 . Thankyou for taking the time to read my story.

Good luck to you all and best wishes for your futures.

Other links;

EPP local website

British pain society

Amazon link for course manual

I have had Bowen’s disease, a rare skin disorder characterised by the formation of patches of red scaly skin on my legs since the year 2000. My legs from knees to ankles were discoloured and the skin was thin and easily broken. I used a cream prescribed by my doctor, and for years I seemed to be trouble free.

In 2009 , I noticed that the red scaly patches had scabs on them so I went to my doctor for advice. She sent me to my local hospital for a biopsy and after a week or two I received appointments to Attend the dermatology department at St Richard’s hospital in Chichester, for treatment called Photodynamic therapy ….or PDT. The treatment seemed strange to me. The first week for one day at 11am and 2pm and for a second week on the same day at 11am and 2pm. I wasn’t at all keen to have the treatment but when my doctor told me it was a treatment for pre-cancer, I couldn’t say no!

I arrived on the first day of my treatment feeling nervous and worried that my legs might bleed and be painful when touched. The specialist nurse was so kind and gentle. She explained my treatment in detail, easing my mind that there would be no bleeding and then she carefully examined my legs for the red patches. She found four patches in each leg needing the ‘light treatment’ so I relaxed back and watched her making my legs better.

She shaved each patch close to the skin, then applied a cream and covered each patch with a clingfilm dressing . She explained that this was to bring the bad cells to these parts of my legs. With four dressings on my legs, I was free to go and have lunch and had to come back at 2pm. I also had to take paracetamol at 1pm, one hour before the next part of the treatment. I had also been told to wear trousers, to stop getting any light to the patches.

When I came back at 2pm, all the dressings were removed and I had to keep very still while the lamp was shone onto the bare patches for 9 minutes. As the nurse was able to group some of the areas together , I had to suffer only 3 lots of 9 minutes and when the heat felt too much, she sprayed the area with water to cool them . The spray was so wonderful, I was able to relax.  I couldn’t help laughing though when she explained that to make the 9 minutes go quickly it was better to chat . It was the last thing I wanted to do , but she was so right and the time went quickly after that ( 9 minutes is a long time when the heat of the lamp is in one place) She explained that the heat was killing off all those bad cells that the cream had gathered together while I was having lunch. I felt so much better hearing that piece of news!

By this time I had given up watching what was happening as she sat at my feet, and when the heat was finished I was amazed to see that the heat had only touched the patches and my legs werent burned. she put thick dressings on each of the 8 sore patches and I was able to leave after the hour at 3pm, and my brother was there to bring me home faster than the bus.

I had to keep the light off my legs at all times and after 3 days I was able to shower and take off the dressings. Every one was clean….no oozing and I was thankful that there was no blood.

I went through the whole process again the following week and as the wounds were still fresh, the second week it was quite painful, and took twice as long to heal. but I am so pleased and proud of  myself that I had PDT because now I have no nasty scabbypatches. By creaming my legs every daythey are now smooth and the new skin is pink and not dark red as before.

For anyone who might have PDT in the the future, I would have it again without any doubt.

Other information on PDT : click on this link

A while ago I had been diagnosed with an accoustic neuroma and after three years of MRI scans to monitor growth it was decided that further treatment was required .

My consultant offered my a fairly new treatment called gamma knife (no knives involved!) . I had to go to Sheffield to The Royal Hallamshire Hospital and after a consultation there and a short wait I was off for my treatment.

Now this was not painful, just a little uncomfortable. You have a scan and test and then a construction is placed on your head. From this they can measure exactly where your neuroma is, taking measurements form the scans. You are then placed into a scanner rather like MRI and various domes like a colander are then put into place. These are for gamma rays to pinpoint your neuroma. You just lay there, you feel nothing , only the nurses and doctors are talking to you. When the procedure is completed the cage is removed from your head and you can go back to your room and rest , returning home the next day.

Then each year a follow up MRI is done. Now this treatment does not remove the neuroma but it either stays the same or begins to shrink

I hope my brief desription will encourage you to try this treatment and have good results

Dear Reader

This entry is to share with you an experience of NHS palliative care for my wife at home . The care followed a prolonged spell in hospital after an operation for cancer, Sadly and tragically ,the cancer was advanced and my wife went into intensive care. After rehabilitation at Bognor Hospital she came home where she wanted to be.  It was after a blood transfusion and diagnosis of terminal cancer that the palliative care team from St Wilfred’s hospital were informed and a personal nurse was assigned to my wife. The nurse visited a number of times in a very comforting consoling role which established a personal caring relationship.

It was now that the full power of the NHS palliative care services came into play . The primary Care Trust via the district nurses, having been informed of my wife’s condition delivered all the necessary equipment for care such as an electronically operated bed, commode perching stool, frame etc. Following that the rapid response nurses and the community nurses attended to my wife’s needs until her life’s end. They answered the urgent calls I made to them with great patience and understanding. At night there was further help at hand if it was necessary to phone the out of hours doctors and nurses on duty

A further layer of help came from carers sent to wash and prepare my wife in the mornings. As time passed night nurses were provided two of three times a week to help me as carer through the long night vigil

The Doctors and staff at this surgery helped and attended my wife in her inevitable decline. I shall always be grateful to them and remember with pride the courage and fortitude of my wife at the extremity of her life

Patient experience project for West Meads Surgery

More and more these days, health organisations are recognising the importance of patient experience in informing and shaping services.

West Meads surgery and the friends of West Meads patient group would like to compile a directory of patient experiences.

This will then act as a resource for other patients and may be helpful to those commissioning for services.

Do you have a story to tell or an interesting or informative experience to share with others regarding your use of the health service or a related service . Do you think it would be of help or of interest to other patients?

If you can answer yes to any of these questions then we would be interested in your story. We would like to add these to a directory on a website and will keep contributions anonymous ( unless you would like to add your name)

Examples might be :

• My experience of having an operation or procedure
• Ways of coping with and managing a long term health problem
• An NHS service or other organisation that helped my health or wellbeing
• etc – your ideas welcome

The contribution should be something informative, constructive, maybe positive and inspiring, and of benefit to other patients. The project is not for patients to give feedback on the practice or for complaints.

There are different routes for this (practice manager or the Patient Advice and Liaison service). No information will be published about any health professionals or any other third party by name.

Please contribute to this if you can – we would love to hear from you!

Submit your written or typed account/contribution to the receptionists at West Meads in an envelope marked Patient experience project