Patient stories: 2018
Mr Davies was delighted to be able to tell me about his story with regards to his experience as a carer to his late wife, who passed away on 31st December 2016 in the Jean King Suite, The Willows at Yeatman Hospital.
Mr Davies’ wife was a retired midwife who was diagnosed with advanced breast cancer. After receiving treatment for six months at the MacMillan Unit at Yeovil Hospital, Mrs Davies was given the ‘all clear’. Mr Davies’ describes his experiences of the MacMillan Unit as exemplary.
Mrs Davies subsequently suffered from a convulsion, which lead to a scan and she was found to have secondary cancer in her liver and brain. Mrs Davies immediately went to Bristol Hospital to receive a course of treatment, but she was unable to go back to continue with the treatment as she became too ill.
When Mrs Davies became very poorly whilst she was at home, her and Mr Davies made a joint decision that she could no longer continue to stay at home as she unable to move. Mr Davies stated that their General Practitioner made sure that Mrs Davies was admitted to Yeatman Hospital, as it is their nearest local hospital.
Mr Davies recalls various feelings of uncertainty at this point. He recalls the doctor on the ward sharing with him that doctors ‘don’t get training on how to give bad news’. He also recalls being told, by an outside agency, that the ward wasn’t suitable for end of life care. There were discussions around care packages from Marie Curie, but the correct package was not available. A nursing home was suggested and Mr Davies visited some nursing homes, but he and Mrs Davies really did not feel comfortable or happy with the idea of a nursing home. With all of these feelings of uncertainty, Mr Davies was very well supported by the nursing staff on Rowan ward and was encouraged to speak to the Matron about his concerns. Mr Davies wrote to Anne Hiscock, Matron at Yeatman Hospital, and she immediately visited him on the ward. Anne immediately made it possible for Mrs Davies to stay on the ward, as per her wish. Mr Davies was reassured by Anne and the staff and he describes Anne and the team as kind, caring, compassionate and they could not do enough for him and his family. Mr Davies has a disabled son and another son, along with two grandchildren. He recalls the nursing staff always asking after them all. He recalls always being directly asked himself if he was alright and if he had eaten etc.
Mrs Davies was at The Willows for three months. She enjoyed being in the bed next to the nurses station, as being a retired nurse and midwife herself she could engage in what was happening around and have friendly conversations with the nurses. Towards the end of this time, she decided that she would like to be moved to the Jean King Suite (purpose built end of life suite) within the ward. Mr Davies describes the suite as a lovely personal suite with an en-suite and kitchen. Sadly, Mrs Davies passed away on 31st December 2016.
Shortly after Anne approached Mr Davies to ask him if he would be interested in joining a Bereavement Café/ Group that she had set up. Mr Davies’ first thought around this was did he really want to talk about his late wife and what had happened. However, he decided to go along and found that the group was nothing like he had envisaged. It was a group of people getting together for coffee, cake and a chat but they all had a common factor and were able support each other and be there for each other, week upon week. Mr Davies feels that the Bereavement Café has had a huge positive impact on his life and he doesn’t know what he would do without it. The group meet weekly and are joined by a voluntary nurse and voluntary Health Care Assistant. They talk about all kinds of things and are even planning a day trip out together later this summer. Mr Davies wanted to highlight the time, dedication and compassion that the voluntary nurse and Health Care Assistant give to the Bereavement Café.
It is always so rewarding to receive such positive feedback from patients and their loved ones.
We all take huge pride in all aspects of our clinical care here at the Yeatman, but end o life care is a very special and intimate element of nursing, which we view as such a privilege to deliver.
We continuously strive to improve our knowledge and skills, and regularly reflect on how we can make what we do even better; as there is always room for improvement, no matter how good we think we are...
X is a 23 year old young man who three years ago was studying mental health nursing at Bangor University. He was diagnosed six months after beginning University with bipolar disorder. For two years he was unstable with frequent medication changes and eventually had to move back home to Sturminster to live with his Mother. He was taking mood stabilisers and an antipsychotic when he returned. In line with guidelines for bipolar disorder the CMHT team stopped prescribing his antipsychotic as they felt he no longer needed it, and the mood stabliliser on its own would be enough to keep him stable.
On Thursday 25 January, after withdrawal of the antipsychotic X began to feel unwell quite quickly. The patient’s Mother quickly contacted the CMHT team on Friday 26 January. However he rapidly became more unwell over the weekend.
On Monday 29 January the CMHT arranged for an assessment and a psychiatrist assessed that X was psychotic. The psychiatrist said she would speak to the bed manager and send the Crisis Team. X agreed to go to St. Ann’s as a voluntary inpatient. The Crisis Team attended at 5pm on Monday 29 January and said that if he had not agreed to go in on a voluntary basis they would have sectioned him as he was very unwell by this stage. However X began to feel that the team were very unhelpful as they told him “if you don’t take your medication you will be taken away and injected”.
Later that evening they were advised by the Crisis Team that there were no beds available at St. Ann’s Hospital and that someone would come out again tomorrow. Due to X’s psychosis he began to think that he would be kidnapped and injected. His Mother and his girlfriend were trying to keep him calm. X’s Mother pointed out that her son is a tall, well-built, fit young man who could easily have physically moved her and his girlfriend out of the way if he wanted to get out of the house.
The following day, Tuesday 30 January, the Crisis Team arrived in the afternoon. By now X was under the impression he was on a secret mission and had to get to Wolverhampton. “Nick from the Crisis Team who attended was great with X, he really managed to calm him down” said X’s Mother. Nick said that X needed to be in hospital and he would ring later. At 6pm they were advised that there were no beds. However, in a bid to find a way to get X admitted, the team suggested that they section him, and the assessment wouldn't take place until the following day, despite the fact that X was still willing to be voluntarily admitted to St. Ann’s.
X’s Mother and girlfriend had an even more difficult night as he wanted to leave the house as he believed there were people in the woods and he began barricading the house. X’s Mother did not sleep at all that night.
In sheer frustration X’s Mother drove to Wimborne CMHT and door-stepped the psychiatrist. She was extremely shocked that X was not an inpatient. In relief that she had found someone who realised the seriousness of the situation X’s Mother burst into tears and then explained that X was going to be sectioned as a means to get a bed. The psychiatrist from Wimborne CMHT wrote a letter strongly disagreeing with the section. X and his Mother were very happy with the treatment and support received from Wimborne CMHT. The team performed as was expected and they have no concerns about their actions.
X’s Mother then rang the Crisis Team to ensure that it was on record that she did not agree with the section. She was told the section was going to happen anyway and the team would be round at some point. Another phone call was received later on that day explaining that the psychiatrist from the Crisis Team was going to carry out an assessment. After assessment, the psychiatrist agreed that a section was not necessary but X did need a bed at St. Ann’s.
That evening a bed was found on AAU – Seaview in St. Ann’s. The following day X’s Mother received a phone call from a bed manager who explained that they had not been made aware of the case and apologised for what had happened. X’s Mother explained that this phone call from the bed manager is the only reason she had not made a formal complaint.
In total X waited 4 days for a bed whilst suffering a psychotic episode. In addition, X’s Mother is concerned what could have happened if X had been alone and not had her there to fight his corner. He was willing to go to hospital but would have been sectioned against his wishes.
X and his Mother would like the following points to be noted and/or actioned by the Board:
- X and his Mother feel that everything seemed to go wrong when the Crisis
Team came into the picture and noticed that:
- They appeared to put more obstacles in the way of the required admission.
- It appeared there was reticence to attend and assess the patient.
- There were different staff at each Crisis Team visit which added to X’s paranoia.
- The Crisis Team appeared to have no compassion.
- Why when there appeared to be no beds at St. Ann’s was no further action taken to find X a bed?
- A significant risk had been taken leaving X with his Mum alone over the weekend.
- X is now very angry that his Mum and girlfriend were left to deal with him. His girlfriend had never seen him in this state before which was a shock for her.
- Finally, why was the word of X’s psychiatrist not good enough to be sent directly to St. Ann’s for a bed?
The Community Mental Health Services Manager, Crisis Team and Bed Manager have reviewed the story of this gentleman and his mother, and are really grateful they spent the time providing their feedback. All services involved absolutely agree that to wait four days for an inpatient bed whilst experiencing a psychotic episode is a highly distressing situation to be in for the person and their family.
The Community Mental Health Services Manager and Inpatient Services Manager contacted Mr X and arranged to meet with him and his mother to discuss what happened.
From this feedback the team are able to improve the experience of people needing to access crisis care and to help avoid the situation that Mr X and his mother found themselves in earlier this year.
The actions that were taken from the feedback and meeting are as follows:
- We are currently planning the detailed implementation of the Acute Care Pathway Review, which was a public review of mental health services led by Dorset Clinical Commissioning Group. The review will see some significant changes to the current structure of the Crisis and Home Treatment Team. The current East and West teams will be devolved into locality teams that ‘wrap around’ local community mental health teams (CMHT’s). We feel this will positively impact joint working between the Crisis Team and CMHT’s, as decisions about who needs to access crisis support and inpatient care will be made jointly by the CMHT and local arm of the crisis team. The crisis workers will be able to be co-located in many cases with local CMHT’s and attend their team meetings to discuss people jointly. This will improve joint working and enable CMHT’s to be more involved in gatekeeping decisions. In addition, as staff will be allocated to a locality, the Crisis staff will get to know local people using services better and there will be more consistency in the Crisis staff seeing a person at home. From our discussions it sounds like this change would have been of real benefit to the situation you experienced. The intention is for this change to be effected from April 2019.
- An improved technology solution to the bed management system. Currently, we use some manual methods in bed management which leads to the risk of human error. We are implementing an electronic system which will ensure the Crisis Team and bed managers have up to the minute, consistent information about bed states and potential admissions, so as to manage this as smoothly as possible.
- We are undertaking a staff development programme with the Crisis Team over the next year with our Organisational Development Team. The purpose of this is to look at how to support the team with upcoming changes, and how to manage working in an acute setting and the impact this can have on staff behaviours and therefore patient care. The aim is for this to be a restorative process that supports staff and improves care as a result.
We have undertaken a reflective feedback session during a Crisis Team meeting about your experience, which we do for all feedback received. Some particular staff were referenced in the concerns and we have therefore also addressed in one to one supervision the feedback about tone and style, both positive and negative, and the impact this had on the experience.
DS is an 38 year old man, who lives in Bournemouth. In 2015 DS had an operation on his Achilles tendon. Unfortunately this was not successful and he was left in a cast and then a boot. He had a second operation, where bone was removed from his hip and used to help the bone to form in his foot. His foot was also pinned. The wounds healed but unfortunately there were further complications which meant a third operation. Prior to his operations DS played football and was not overweight.
After his operations DS weighed 122kgs, over 19 stones. Unfortunately due to his long period of illness his position at work became under threat as he was not able to carry out his role. Luckily he was offered voluntary redundancy from his well-paid job in retail. DS visited the doctor for thrush and had a diabetes test. His BMI was 34.96 and he had a very high HBA1c level. The doctor prescribed three separate medications and statins. He was also referred to the Diabetes Education Programme.
He was also seeing the physiotherapists at Royal Bournemouth Hospital for his foot and began to visit their gym regularly. He said their help and support was magnificent. He explained that going to the gym for physio really was a springboard for him. He explained that he had never been in a gym before. He explained that the physiotherapists at Royal Bournemouth now refer to him as their pinup!
DS visited the Diabetes Education Programme and undertook the 3 sessions. He found the information useful despite having a fairly good knowledge of the disease because his mother is diabetic. He says that he realised he was going to have to make a significant change in his lifestyle. He knew his mother and her friends did not seem to try and manage the disease as well as he thought they could. He decided he would be different and decided to really engage with the advice he was receiving.
One of his motivations to change was to be there for his children’s children. So he began an exercise and healthy eating programme. With his food, he used the information he had learnt from his courses at the Diabetes Education Programme and made better choices. He then reduced the amount of food he was eating by only using tea plates. In regards to his exercise he initially tried to find something he really enjoyed and began with table tennis, playing in Boscombe Gardens. He then had to walk back up the hill to get home. He explained that without his experience under the care of the physiotherapists at Royal Bournemouth, he really would never have considered going to Littledown to use the gym. He feels that safe introduction to a gym environment took away the anxiety and fear of walking in to a public gym.
He has now lost 44 kgs (nearly 7 stone) and is now pre-diabetic. He takes no medication for his diabetes which is now completely controlled through his lifestyle. He looks back at his diet when he was going through the issues with his foot and admits his diet was bad, he ate comfort food and ice cream and was constantly thirsty. He now enjoys healthy food but still enjoys a Chinese meal once a week. To control his alcohol calories, when meeting up with his male friends he now arrives a couple of hours after everyone else and leaves a little early. This way he does not get caught in the cycle of buying rounds and feeling he cannot leave.
DS says he feels younger. He incorporates walking into his day whenever possible and goes to the gym almost daily. He now helps other friends who are diagnosed with diabetes and a friend recently has lost 6 stone.
He was very happy with the information on the courses from the Diabetes Education Programme but is concerned that some attendees really did not grasp how serious diabetes could be. He felt some were of the opinion that the tablets would do it all and they did not need to change. He wonders if a little more information with a shock factor i.e. how many diabetics lose a limb or their eyesight, could help people who do not have a strong will. He now does voluntary work for Victim Support and is currently looking for a new role, perhaps within the NHS.
We are delighted that DS was able to use the information provided on the Diabetes Education Programme to make lifestyle changes that resulted in him controlling his diabetes with lifestyle alone. The Diabetes Education Programme aims to empower and motivate people newly diagnosed with type 2 diabetes
Individuals approach a diagnosis of diabetes in different ways. Whilst people like DS use the diagnosis as a motivator for change, for others it takes a while for the seriousness of the condition to register. The programme is structured to include information about diabetes complications, what they are and actions to reduce the likelihood of complications.People attending the programme don’t remain under the care of the service but rather go on to be looked after by GP surgeries. Whilst the programme educators have long term outcome data and patient feedback to evaluate the programme, it is good to hear about the impact on an individual.
I am Mrs X, a new mother of a 5 month old baby. I’m a Speech and Language Therapist, specialising in feeding, and this role encompasses regularly working with Health Visitors (HV). I’ve experienced the Health Visiting service in a new light, after the birth of my child.
When the HV completed her initial home visit, she was more sympathetic and supportive; they were present for a longer period of time and saw how upset and distressed my child was, following his feeds. The HV was the first person to say I wasn’t losing the plot and advised me to take him to the GP. I went to the GP, and the outcome was that he had a cow’s milk intolerance. From this, it was recommended to place him onto a special formula and I immediately noticed a vast improvement after feeding, and in general.
Prior to this, we had previously attended Poole General Hospital (PGH), due to his poor weight gain, and a heart murmur was identified. A scan was arranged and this will be reviewed at 1 years of age. At this time, there was a very strong focus upon his weight. However, following this I still remained concerned regarding his feeding and presentation.
In addition, she took time with my husband ensuring that he was involved and understood what was happening. I really appreciated her approach, as it kept him part of the journey with our son. I also found it very helpful that the Health Visiting service provide set times and are always on time, which other services don’t always offer. As my baby was born in November, knowing when services are coming made it easier for us to go out and do things before it got dark and cold.
She had completed additional visits whilst his weight was being monitored and we were trialling the new formula. When she did this, she provided us with a phone number to contact her, and we now use drop-in clinics monthly to have him weighed and to seek further advice; I make sure that I attend these, as they are very useful. Others may be unable to attend these if they do not access to a transport.
Even though I have extensive knowledge of child development and the service in general, I would have liked to have a longer period of support from the HV to just to check everything is okay; maybe even a telephone call, just asking the question ‘how’s everything going?’ because I would always have had something to ask!
Overall, the service we have received, from all the services, has been fabulous and all staff are very supportive and caring; every person we’ve seen has been great and knowledgeable – from PGH, to the GP who we have always been able to see on the same day.
The main point about my experience with the HV is that she listened to my concerns and did not dismiss these, which in turn had a huge impact on my son's wellbeing. I felt more listened to with her, than I did with other services.
The Health Visiting Service was delighted to receive this positive response regarding the support a family received from one of our teams in Poole.
This response has been shared at a recent Poole HV Locality Meeting to support good practice and learning and will also be shared at the forthcoming Pan Dorset HV Leads Meeting for wider dissemination.
The comments regarding access to Well Baby Clinics have been noted and will be fed into our current review on this aspect of service provision by the Health Visitor Advisory Forum. It is acknowledged that the mother would have valued active input or telephone support from the service for a longer period, whilst it is noted that she had contact details for her Health Visitor. Therefore, it is important that practitioners continue to work to empower families to take a proactive approach - encouraging parents to contact the service to discuss any concerns or queries they may have, rather than feeling they have to wait for the service to contact them. Our aim is to provide a personalised service that can respond to identified needs and supplementary advice or additional visits can always be arranged as required.
Caring for someone with dementia entails a lot of ‘firsts’ – the first time you realise they are never going to get better. The first time he went out and forgot where he was. The first time he no longer knew how to make a cup of tea, and the worst ‘first’ of all – the first time he didn’t know who I was.
All was well with dad living in his annex, pottering around with support from me and my husband – we both work full time, and took it in turns to help dad get up each day. Suddenly he took a down turn and we realised we needed more help. This was especially difficult for dad, being from a Dorset gypsy background there is a cultural fear of ‘authority’. I gently persuaded him it was for the best and so a social worker arrived…sadly he didn’t gel with us and offered very little support. I felt the assessment was a form filling exercise - I hadn’t slept properly for 18 months due to dad calling out every night, so being offered a trip to the cinema was not what I needed. We were offered a week respite, but with no notice and the home being well below standard I wasn’t letting dad go there. I felt awkward, we don’t like to ‘make a fuss’, but I asked for a different social worker, who was much better for us.
She organised care workers to help dad get up and eat etc. It was difficult as they never arrived at the same time and with staff were continually changing there was no consistency.
Eventually this situation began to have an impact on my working life. It was agreed I could compress my hours to four days, which helped me balance work and dad.
Christmas 2016 dad fell over, he could barely stand unaided - he was taken to A&E but sent home as no broken ones. He fell again the next day, I tried to lift him and in the confusion he punched me … hard. He was taken back to A&E while an emergency care home was sought. Against the wishes of his GP and Social Worker he was sent home again, this time he couldn’t stand at all so we stayed up all night with him to keep him safe. I felt we had been treated very poorly, with no understanding or compassion shown to me or my dad.
A care home in Hampshire was found (nothing in Dorset available) - I asked for a nursing home but my views were not listened to. After two weeks dad was asked to leave as he ‘needed nursing home care’. I was offered a place the other side of Weymouth but turned it down, as dad needed to see us and would decline if not.
A specialist dementia nursing home in Bournemouth was found. Dad was sadly mistreated there and I lodged my concerns to social care and the CQC, who inspected and found them ‘Inadequate’ in all areas. It was very distressing as staff at the home didn’t speak or listen to me or dad and spoke to him in a gruff way. He stopped eating and drinking as they were not making any effort to support him. Dad lost 3 stones in 9 weeks and was covered in bruises.
A lovely district nurse assessed dad for Continuing Healthcare – she even came to my home to explain why and how it worked, she listened to me and I felt at last someone was showing us care and compassion.
managed to get dad moved to a new and vastly better nursing home, where he
started to eat and drink again. Sadly after only a short while he died. They
were wonderfully supportive of us all and dad had a ‘good death’.
Looking back it’s
like a nightmare. I don’t know how I worked and cared for dad while hardly
sleeping. I would have gladly cared for dad full time but finances prevented me
and I remain very sad about that, but very appreciative of my employer for all
their support and understanding of my situation.
summary, I feel that my story demonstrates:
- A supportive employer has a huge impact on the ability of the carer to cope.
- The importance of recognising yourself as a carer.
- The need for staff in social and healthcare to remember that carers when initially beginning to use services do not know how the system works.
- Recognise that carers when accessing services are not trying to walk away from their responsibilities.
- If an NHS staff member found it so difficult to navigate and cope with the system how are other members of the public managing.
- The carer knows their cared for person really well – listening to them
will improve the quality of care you can provide.
This story covers a wide range of issues and is focused on the patient and carer’s journey rather than a specific service. In this case, it is felt that feedback from the Dorset HealthCare service included in the story would not add any value.