The Min – the patients’ view 

 

The recent report on the Mid-Staffordshire debacle concludes:

 

"People must always come before numbers. Individual patients and their treatment are what really matters. Statistics, benchmarks and action plans are tools not ends in themselves. They should not come before patients and their experiences. This is what must be remembered by all those who design and implement policy for the NHS."

 

The Royal National Hospital for Rheumatic Diseases in Bath has been delivering highest quality care over many years, and the evidence from the Care Quality Commission and Monitor demonstrate this fully and clearly. The many thousand of patients, many Members of the RNHRD Foundation Trust back this assessment and go much further. For many patients, both locally and nationally, this specialist hospital dealing in chronic pain and rheumatologic conditions has been and remain a last lifeline, where their conditions have been alleviated and their rehabilitation secured. Not only this but the atmosphere of care engendered by this quirky, unusual and historic hospital can be shown to affect patients in a very positive way. The Min does not feel or seem like the usual hospital and many of the attendant fears that patients bring with them are absent. Many patients will also attest that this affects the way they are dealt with my most members of staff, from the clinical to administration.

 

But the Dr Ashok Bhalla, Chief Medical Officer of the hospital, denied this at the last Annual Members’ Day and claimed that it was merely the expected professional response and that there were none of the additional benefits so often claimed by patients.

 

We patients want The Min to continue to do what it does so well. This is clearly in our interest and born out by our experience. The issues have all been financial, born out by benchmarks, statistics and creating action plans with only one financial aim in mind. The Board and Officers have always claimed that patients’ needs and services will be protected, but the Neuro-rehab Unit is being closed, showing these assertions to be hollow. The unique services for rare conditions such as Ankylosing Spondylitis and Psoriatic Arthritis, in which the hospital and its research arm specializes, are now shown to be at risk.

 

Since the creation of the RNHRD as a Foundation Trusts, throughout encouraged and ratified by Monitor, this small, specialist and research-driven hospital has been increasingly overburdened with additional administrative staff needed to respond to the benchmarking processes, provide statistics and create action plans. By merging with a large general hospital like the RUH, this administrative load can be largely removed, thus making the financial prospects of this dearly loved hospital far more viable. Clearly there will need to be developments and new markets identified. Professor Blake, in his recent lecture on The Min identified one obvious one of obesity and diabetes. This would fit well with mission of The Min.

 

We patients wish The Min to stay where it is in the centre of Bath, dealing with many patients with loco-motor challenges, giving easy access and continuing to deliver the highest quality of care that we all respect and on which we rely. We want The Min itself cared for. It is part of our heritage and has played a fundamental role in the history of medicine, having created an exceptionally high worldwide reputation that we all value and wish to protect.

 

Patients must now become vocal and unite to protect and preserve this wonderful institution.

 

Comments (7)

 

 

Gillian Eames:

Apr 19, 2013 at 09:29 PM

 

After being mis diagnosed for around 7 years . l was starting to feel that my GP was right and maybe it was physiological and nothing was wrong with me but new that the pain l was in and the changes to my posture was not right. l was somewhat relieved when told l had Ankylosing Spondylitis but somewhat scared as l had no clue as to what this condition was and new nobody with Ankylosing Spondylitis .

l was cared for by a fine Rheumatologist for over 20 years who wanted me to be referred to The RNHRD in Bath as he felt that l would benefit greatly from the excellent treatment they could offer me .l felt very isolated and alone living with Ankylosing Spondylitis ,even though my family and friends was supportive to me they had no idea what life was like for me raising to boys alone working and trying to come to terms with this chronic pain that was having a huge impact on my life .

l can honestly tell you l was very frightened to what my future held for me and frightened that l would not be able to care for my two son's because of the unbearable chronic pain l was in.

My first appointment with Dr Calin the consultant in the RNHRD had arrived and l was very nervous my mother came with me .He listened to me and was very understanding to how my emotional state was. He new of my Rheumatologist back home and l remember him saying Gillian between us we will care for you and get you to be able to self manage your AS and pain. He explained about the Mineral Hospital residential AS Courses and said he would like me to be booked on to attend a course But he asked me would l agree to be admitted as an in patient on the wards . l agreed and was admitted a week later. l was feeling very very nervous about being away from my two son's and family but most of all l was nervous about being so far away from home as l live in Bromley kent.

The first person to come and put my mind at reast was Nikki the lady that was the bed manager along with many other duties, she was so friendly and reassured me that l would go home feeling able to cope with what was ahead of me l remember her speaking to me in great depth about the As Courses. l was very tearfull as l was missing my son's .

Every member of staff at The Mineral Hospital was so caring and friendly that l soon started to feel more relaxed and knowing that l was in good hands. Everyone that worked at the Min from domestic staff to physcians treated me with such kindness and it was as if they felt my pain.

After 10 days l went home feeling positive about my future and was ready to go back for the AS Course in 4 weeks .

That first AS Course changed my life completly l was with others with Ankylosing Spondylitis and in group discussions l remember thinking l can relate to several symptoms that was being discussed. My family visited me half way through the course and the look on thier face said it all. The pained looked had gone from my face and l was standing taller and my mobility had improved. l went home with my AS tool kit of coping skills and new that l was ready to deal with life living with this chronic condition. When l would slouch into that curled up comftable position l would hear the voice in my head of Jenny and Lou the Physio's POSTURE DARLINGS and nearly 20 years on that still encourages me to stand tall.

A few years ago my eldest son came to pick me up after the AS Course and he walked pass me because he did not recongnise me, when l stopped him he had tears in his eyes and said mum you are taller and look so well.

He was so pleased in seeing me look so well that he wanted to thank the physio in body shop who was doing my discharge measurements . l remember him saying to Ingrid thank you for giving us our mum back she looks so well and he told her how hard it was to see me struggling to cope in the past. The whole AS team PAST and PRESENT l owe my life to because they have given me the strength knowledge coping skills and encouragment to be in controll of my AS and not my AS be in controll of me

Apart from the excellant care we recieve from this centre of excellance .Over the years l have met others with Ankylosing Spondylitis on the Min AS Courses and we have formed a support network.between us all and l have made life long friends.

The present Consultant Rheumatologist Dr Raj Sengupta is well respected by every Ankylosing Spondylitis patient that l know who is cared for by him.

As to is the whole team in Body Shop Ingrid, Brisca, Amanda and team involved in As Courses. Its so reassuring to know that you can always contact them.

After having spinal correction surgery in 2009 l was incarserated in a spinal jacket for 6 months and when the jacket was to come off l needed intense physio/hydro to regain my mobility, locally in Bromley it was a 12 week wait for hydro once a week. l contacted Dr Sengupta and asked could he help me. l was a in patient on the wards within 2 weeks for 10 days and was having hydro/physio twice a day l went home minus my (Telly Tubby jacket as l called it) and had regained my mobility.

The feeling we experiance from the whole enviroment and all of the staff at The Min is something l have never felt from any other hospital and believe me l have been a patient of quiet a few. l hope that the Maagement feel as proud of what thier hospital delivers to patients as what the patients do and that they do all they can to keep the unique services they provide in the enviroment of the site at Upper Borough Walls.

l also took part in clinical drug trials for 5 years for Anti-TNF Enbrel through The Mineral Hospital Clinical Trials Unit in 2002 so maybe you can understand how this hospital has been my life saver in so many ways .

The research that this hospital does is also so very important for the future generations with Rhematic Conditions.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lyndsey Shellis:

Apr 20, 2013 at 06:07 AM

 

My husband is a patient at the royal mineral, the care he has received for his RA is outstanding, he goes once a month for an infusion in the day unit and without the care and understanding of the staff would be in a darker place ... The staff are hard working and very knowledgable and the hospital is a national treasure and efforts for it to remain should be paramount.

 

 

Daniel Lawton:

Apr 21, 2013 at 11:42 AM

 

I have been receiving treatment from this hospital for 25 years. With out it,and I am sure, my quality of life and many others would be very very much reduced.

 

 

Vicky Hirst:

Apr 25, 2013 at 12:31 PM

 

Bath RNHRD has been a part of my families life for at least 20 years. My father started going when he was first diagnosed and it saved his life. I am not exaggerating about it's impact on my life when I say it has done the same for me 3 years ago when I was diagnosed and was fortunate enough to go on a 2 week impatient course for AS. I was at my lowest - very depressed, in severe pain, bent, with no hope and dreading what it would do to my young family. The course changed my life. I came out upright, positive, in a lot less pain, armed with information and strategies to face the future and with the knowledge that the amazing doctors and physios are only a phone call away. It was summed up by my then 8 year old daughter who after not seeing me for 2 weeks just stared at me. I asked her what was the matter and she just said - you look amazing - so much younger and prettier! My husband could hardly believe the change and my friends were shocked to see me stride into the playground instead of hobbling in slowly. They all agreed I looked like a new person! This could not have been achieved through normal, occasional visits to the consultant. The impact of this course cannot be underestimated. It not only provides people with hope, knowledge and a new start, it is also beneficial to society and the NHS, as it allows many people to carry on employment and cuts down on many repeat visits to doctors and hospitals.

 

The hospital's importance goes beyond this course. The consultants are amazing. Myself and many others, travel a long way to see our consultants due to their expertise, excellence and attitude. Following years of ignorance and misdiagnosis elsewhere, this place is a beacon of hope! I have talked a lot about my experience at Bath to my husband, and a few months ago I took him to an appointment there. He had been with me to see consultants in other hospitals and did not believe how different Bath is. He is seldom lost for words, but he could not believe how friendly the consultant was, the pains he took to explain things or the lengths he went to to help me. He reacted like a huge number of people I know on their first visit (including me) who leave in stunned silence afterwards!

 

The hospital is also important for the research and training it does. I am participating in an anti-tnf drugs trial for people without fusion at the moment and have to visit the hospital from Devon every month. It is a fantastic opportunity to not only help myself, but also help future generations. The hospital's participation in studies like this is incredibly important for our children as well as ourselves.

 

This truly is a special place and a life line to so many! Please don't destroy something that works so well. Think outside the box. Find ways to keep it going for the next generations, not just ways to make money!

 

 

william self:

Jun 10, 2013 at 08:55 PM

 

The treatment I have received at this hospital for the last 30 years to treat and relieve the pain of RA is second to none.

The Doctors Nurses and all staff are outstanding with their care and understanding, it doesn't feel like a hospital. I know the disease I suffer is only one of many that are researched and treated at the RNHRD but I can honestly say that without this specialist care my life would be unbearable. This hospital respects you as a person and you are not just a number. Please don't take this unique and specialist hospital away.

 

 

Ms Natalie Ann Elliott:

Nov 08, 2013 at 02:02 PM

 

I have been having treatment and care from the RNHRD for the past two years.I suffer from CRPS ,Fibromyalgia , Osteo-arthiritis and Sjorgens.

When I was diagnosed I had never heard of any of these deseases apart from Osteo-arthiritis.

CRPS or Complex Regional Pain Syndrome is a very rare syndrome that many GPs have never heard of or know how to treat.Without the support of the many Doctors at the RNHRD,I dread to think how I would be coping now.

I have met a lot of lovely people through the CRPS service and made many new friends that are also suffering.I don't know what I would do without their support.

To close down the RNHRD would be like cutting off a life line to so many people who rely its care.

Please don't take away a most very valuable life line.