Patient stories: 2016

Mr. G is an 18 year old man who lives in Swanage with his partner. Mr. G suffers from Asperger’s Syndrome but has received a lot of help in the past and learned to generally fit in. He was under the care of the Purbeck CAMHS team from 5 August 2015. During this time he said that appointments with his practitioner were changed for other members of the team. This happened frequently without prior explanation of the change.

In December 2015 Mr. G went missing for 26 hours during which time he walked from Swanage to Wareham overnight. He was found by a passer-by unconscious in the street. At this time he was living with his parents. Unfortunately their relationship broke down and he was forced to leave. He had a period of living on the streets and then lived with his Grandparents.

Mr. G. started suffering with depressive episodes and began using alcohol and cannabis as a means of self-medicating and although he was being very clear with his mental health professional that he was getting worse there appeared to him to be no shift in his treatment. He was referred to a psychiatrist and Mr G made it clear that he was not happy to be prescribed “antidepressants”. He was prescribed an SSRI which the psychiatrist described as mood regulators, not antidepressants. Mr. G says that he found out on admission later that they were antidepressants.

He admits that he had suicidal thoughts but never felt he was going to act on them. He reports that the CAMHS nurse had suggested that he go as a voluntary inpatient or she would have to section him. He was taken to Poole Hospital where he waited three hours for a psychiatric evaluation. There were no available beds at Pebble Lodge but he was admitted for one night as a temporary bed was available where the current patient had gone on home leave.

“It was awful” he said. There didn’t seem to be many people around. He said that a nurse had spoken to him and explained that they would be looking for another bed in another unit for him as they did not have a space. He said that there was a lot of noise on the unit from other patients and that he found this really difficult as a person with Asperger’s syndrome. He felt unwanted and worse being in Pebble Lodge. He said that he had never had any experience of an inpatient mental health ward, was very anxious during the evening and could not sleep. He was advised that there would be transport picking him up in the morning and taking him to a new unit in Tooting, South London. The transport did not arrive until 4 or 5pm which made him very anxious again and by the time he arrived in Tooting it was 10pm.

Mr. G felt that the care he received at the unit in London was not acceptable for a number of reasons, the most important being that he was there voluntarily but was frequently stopped from going outside. He felt that he was being warehoused rather than being treated. However he met his current partner at the unit. Due to her experience of services and her support he felt he “lucked out” and began to feel better with her input.

On return to Dorset Mr. G said that the transition to the Adult Mental Health Team was messy. He said that there was no preparation for the move to the new service and he had a long wait with no services before he got an appointment with the AMHT. He says he was referred in July and was seen in September for his first assessment. He is still waiting for his second appointment. Mr. G is surprised that, given the waiting times for services, that a referral was not made three months before his discharge from CAMHS. Mr. G says he feels that he has no say in his care. He has been told he cannot have therapy unless he has medication. However he feels better not taking the medication. He says he has no telephone numbers to call if he is in a crisis situation. He says he feels that he is probably getting worse again since September and is suffering from night terrors.

Mr. G feels that the following issues were not acceptable:

• Due to the distance from home to the unit in South London his Grandparents could only visit once a week which made him feel further isolated;
• When on Pebble Lodge the other loud patients were extremely disturbing for an Asperger’s patient;
• Seeing different nurses from the CAMHS service was disruptive and resulted in a reduced rapport;
• Being prescribed SSRI’s despite not wanting to take antidepressants and feeling that the psychiatrist used his lack of knowledge against him in this regard.

Mr. D is a 65 year old man who lives in Winterborne Kingston.

Mr. D had lip surgery at Poole Hospital Dermatology Department which he considered went well. Unfortunately the wound would not heal and so a second procedure was necessary and a little more tissue was taken to assess if there was an underlying issue. Happily all was well and he was discharged with a continuous stitch in his lip which he was advised would be removed at his GP practice.

Mr. D went to his GP practice on 31 May 2016 to have the stitch removed at the appropriate time and was seen by a practice nurse who was not someone he had seen previously. Mr D said “I’m not sure if she was having a bad day or was a locum or something but she was quite brusque”. The nurse asked Mr. D to sit in the chair, and removed the stitch without a magnifier which Mr. D felt should have been used in this situation.

The day after the stitch was removed, 1 June 2016, Mr. D said his lip felt “tight” and he asked his wife to take a look and see if she could see a problem. She used a magnifying glass and said it looked like there was something still in the lip. As his GP surgery was closed every Wednesday afternoon he thought he would go to the Minor Injuries Unit at Wimborne.

Mr. D said “From the moment I got into the unit it was a wonderful experience. The receptionist greeted me with a big smile and asked me how she could help”. Mr. D said that he was seen within minutes by the nurse who treated him. He commented “I cannot remember her name but she was very warm and friendly”. After using a magnifying glass attached to the couch the nurse advised that a part of the stitch was still in his lip. After careful removal of the stitch he left the department and was very impressed that the whole process took only 15 minutes.

Mr. D advised that he did complain to the general practice. Mr. D reports that the practice admitted that they did not have a magnifier and had now remedied that situation.

Mr. D wanted to let everyone know how wonderful and efficient his visit to Wimborne MIU had been. Mr. D said “I believe that the community hospitals should be expanded as they offer such a local service, parking is free and I am sure they can offer lots more services. “

Mr. D has asked that we identify the receptionist and the nurse who treated him so that he can personally write and thank them for their excellent service. The Patient Experience Team are taking this forward.

Ms. ESK is a 50 year old lady who lives with her partner and son in Bridport. She was previously a Auxiliary Mental Health nurse and worked at the National Autistic Society amongst other jobs.

“I always knew I was different” Ms. ESK stated. She explained she was well known amongst her friends and family as someone who excelled in an emergency and was always calm. She says she felt like “Yoda” due to her calmness under pressure. She feels she always understood people’s behaviours, was a social chameleon changing her own behaviours to meet various situations and had no filter on her thoughts and behaviours.

Ms. ESK’s journey began when she believed that her partner’s family frequently misunderstood her moods and behaviours and she felt highly stressed trying to make communicating with them easier for both parties. She believed that these, and other errors, had looped constantly throughout her life. Ms. ESK felt she was “having irrational meltdowns” over these ‘errors’. Ms. ESK’s sister is a paranoid schizophrenic and she was concerned that she shared this problem so searched on-line with her symptoms. ‘Autism’ would continually be returned in the results and she undertook an online Autistic test that returned a 95% probability that she was autistic. She then watched some documentaries and began to think that her behaviours and feelings were very similar if not the same.

She booked an appointment with her GP who felt she was probably not autistic but agreed that she should be referred to the Steps to Wellbeing Service which was done on 20 March 2014. The referral was passed on to the Bridport CMHT shortly afterwards and then finally passed on to the PAN Dorset Community Adult Asperger Service (CAAS) on 18 August 2014. The CAAS service was launched shortly afterwards in West Dorset. Ms. ESK said that the wait until she was seen by the service was very long but that she was told there were changes to the service which had caused the delays.

Ms. ESK’s first triage appointment took place on 2 September 2014 with an Assistant Psychologist and an Occupational Therapist. Ms. ESK felt they were understanding and listened to her concerns. She said they sat and talked and she cried. She was diagnosed with Asperger’s syndrome on the first appointment and then referred to Adrian, the Psychologist. Ms. ESK said it was lovely to finally be able to speak to someone who understood her and was interested in her. She didn’t have to pretend to be “normal” with Adrian and he confirmed her diagnosis of Asperger’s Syndrome. Ms. ESK was both relieved and a little sad at this diagnosis. She was relieved because she now knew what made her “different”; on the other hand she said “I was sad that I wasn’t really Yoda”.

Ms. ESK had three appointments with Adrian and her feelings ranged from “I’m mad “ before diagnosis to “I’m like a bird and I can fly free”. She now has many more coping mechanisms. For example she is a very anxious flyer – a catastrophist. Since her son was born, she believes the aeroplane is going to crash. She now understands how to manage that and accepts that this is part of her syndrome.

Ms. ESK she says she is terrible with money and relies totally on her partner. When she was younger she ended up in financial difficulties which still remain unresolved but to try and approach an outside agency for support would be almost impossible for her without help. She explained that when in public places she has to filter everything or she will become overloaded. She will get to a point where she begins to stutter or even cannot speak at all so will leave the shop or service. “Trying to get help when you cannot speak to someone is so difficult so you just don’t try.” Ms. ESK identified the following suggestions or issues with the service or her care:

• An official card (like a donor card) which she could hand to people to prove her diagnosis, rather than sharing her full medical history (which she has on paper). This also would help to explain any behavioural issues that may arise in public.
• Was advised that a “personal assistant” could be available in the future if needed but is unsure how to get one. She has received a long list of services but this format adds to her overload. She would prefer a simple booklet be produced so that it would also be easy to understand during “meltdown moments” with a basic index.
• She feels that the title ‘high functioning’ is an assumption statement, hiding the lack of functioning areas she has.
• Ms. ESK is unsure if she has been discharged from the service.

Ms. ESK would like to work. She has been out of work for some years now caring for her son. However she says she fears the repetition of her social and professional mistakes, which lead to her job losses. The situation is very stressful and she fears it will repeat itself without support.

“I understand so much more about myself now” she said. Now she has a diagnosis she feels more relaxed about who she is and understands why she feels and thinks the way she does. “It’s exhausting trying to be normal when you are a different species of human being” she said.

I met with GM at her home. GM’s husband was diagnosed with Early Onset Alzheimer’s at the age of 51, he is now 57 years old and still lives in his family home with his wife and two (out of three) children, with the support of respite care at home overnight at weekends and at a care home, where JM attends daily. This enables GM to continue to work.

During December 2014 JM became very unwell, experiencing hallucinations, sleeplessness and anxiety attacks, which took a toll on his health. JM was admitted to St Brelades Ward, Alderney Hospital during January 2015 to enable a full health assessment to be undertaken.

During JM’s visits to her husband she noticed a change in her husband’s health; he seemed to have a heightened sense of anxiety, was agitated and upset about being on the ward. JM also began to visit her husband at meal times, as had noticed that no help in feeding her husband was being provided. Due to JM’s poor dexterity in his hands he was unable to use the cutlery and feed himself. GM has observed other patient’s food being taken away untouched, as no one was helping feeding them.

At the beginning of JM’s admission GM attended an admission meeting chaired by an Old Age Psychiatrist and with seven other health/social care professionals. During the meeting GM was told that nothing could be done for her husband and that the Consultant wanted to discharge him, in addition she was told they needed the bed space as soon as possible. GM was taken aback by the coldness and lack of compassion that she experienced within this meeting. She felt as though the questions she asked were not listened too and her thoughts and opinions were ignored. She left the meeting feeling very distressed. JM stayed a further 10 days in St Brelades, his medication was changed and he was discharged home with substantial support from social services. JM is regularly visited by Occupational Therapist’s from Kings Park who are very supportive.

GM is very concerned about what will happen the next time her husband needs inpatient care as she feels there is no where appropriate locally that can meet her husband’s needs. GM said that “just because it’s rare, it’s no less important”. JM is currently being seen by a consultant who specialises in old age dementia, not early onset. GM feels that this consultant has no understanding of her husband’s condition or the support that is required to keep him healthy and at home.

GM feels as though she and her husband are in “no -man’s land” and is frightened for the future as does not know what specialised support is available to her husband and her as a carer. GM has been thrown into looking after her husband, running a household and looking after her three children (one just left university, one just starting University and one working in London) and dealing with all their emotions linked to their father’s diagnoses. She has joined the Alzheimer’s Society and attends a bi-annual carers support group with other people who have spouses/family members with early on-set Alzheimer’s/Dementia.

GM has met with the Director of Poole & East Dorset Locality and the Matron of St Brelades ward on 11^th January 2016 and 11^th April 2016 to discuss the above concerns and the actions that have been taken as a result of this feedback. In addition a copy of the nursing notes from JM’s time on St Brelades is being shared with GM and GM has asked for contact to be made with our research department who are conducting research in the field of Dementia and update GM on the outcome of this discussion.

Colin has recently been discharged from Canford Ward, St Leonards Community Hospital after six months in hospital (four months at Royal Bournemouth & Christchurch Hospital (RBCH) and two months at St Leonards) following a diagnosis of ‘Adults Still Disease’. This is a very rare virus which affects 1 in 100,000 people and causes high fevers, rash, and joint pain. It can lead to long-term (chronic) arthritis.

In May 2015 a referral was made by the RBCH to St Leonards Community Hospital and Alderney Hospital for rehabilitation, after four months as an inpatient. In one day Colin was advised in the morning that he was being discharged and transferred to St Leonards Community Hospital for rehabilitation the very next day. Then on the same day, sometime later he was told he wouldn’t be discharged and given the explanation of ‘they don’t accept patients who require a hoist’. Colin was very upset and frustrated by the decision not to offer him rehab and wishes he had never been told about the transfer to the community hospital in the first place, as he had built his hopes up and was eager to start learning to walk again.

A consultant at RBCH wrote to the Matron of St Leonards Community Hospital, explaining that they felt Colin could benefit from rehab in a community hospital. Following this letter, the Matron of St Leonards Community Hospital visited Colin at RBCH with a Physiotherapist and discussed his referral and asked him about his needs. Colin explained how upset he was with the decision not to accept him for rehab. During the meeting the Matron apologised and agreed the transfer and Colin felt much happier that his needs had been considered and he been listened to. Colin was now looking forward to being transferred. However, was disappointed when he had to wait a further five days to be transferred, delaying his rehab. This frustrated him further as when the initial referral was sent, there was a bed available.

Once Colin was transferred to St Leonards Community Hospital, his strength grew and he advised that the regular support he received from the nursing staff and OT’s was exceptional. He was made to feel that nothing was too much trouble. This was a very different experience to his stay at RBCH, where he felt that the staff were uncaring, inpatient and had no bedside manners.

Colin left hospital at the end of May 2016 and couldn’t even stand up, he is now walking with two sticks and this is all down to the support he received on Canford Ward and continues to receive from the Community Bournemouth Intermediate Care Service who visit him at his home regularly.

Colin has had a new wet room fitted, which he is really pleased with and the Intermediate Care Service have organised hand rails for this and outside his house, which he has found really useful.

Throughout Colin’s care he feels that he has been involved with any decisions relating to his care. He lives alone and is very independent and can cook his own meals, wash and dress himself. However, is finding it difficult to carry out day to day tasks, such as the hoovering and washing his clothes. Colin has been looking to gain help from local organisations to support him in these day to day tasks. Although, sometimes he finds it hard to know where to go, to get this help. Colin said he doesn’t need help all of the time, just a little bit, until he gets his physical strength back. Colin said ‘it’s the tiny things, which become big things’ when you are restricted with your movement.

Colin lost his wife, Joan to cancer two years ago and shared with me that he was able to get a memorial plaque added to one of the benches on Bournemouth Seafront. He has set himself two goals over the next coming months, the first is to drive his car in four weeks and the second is to be able to walk along the seafront and sit on the bench commemorating his wife.

I visited Barbara who was very keen to tell me her story about her journey to receiving a Cochlea implant and the massive difference that this has made to her life.

Barbara lives with her partner of 33 years in the Bournemouth area. At two years old she had was diagnosed with Bronchiectasis and has always had severe sinus problems. Barbara recalls always missing school due to her illness and being told that she had a short life span but with her continued motivation and perseverance with her daily self-physiotherapy sessions she has defied the odds and continues to live a healthy life.

Whilst at school Barbara recalls being hit in the ear and the impact of that shattering her ear drum. When she left school she became an audio typist but was unable to continue in this field as she realised that she was not able to hear clearly.

Over the following years Barbara was referred to several Audiology Services and received advice and treatment as her hearing deteriorated. It wasn’t until Barbara developed tinnitus in early 2014 that her hearing problems began to have a significant impact on her life. This was because she could not hear and therefore the tinnitus sound was heightened. Until this point she described herself as being in her own little world as she couldn’t hear. The tinnitus made her life unbearable and Barbara became suicidal. If it wasn’t for her partner, she truly believes that she would not be here today.

After developing tinnitus Barbara was referred by her General Practitioner (GP) to an Ear, Nose and Throat Service within a local acute Trust. She was told at this appointment that she would have to live with her condition. This news was severely distressing and Barbara went back to her GP for advice. The specialist then referred her to Paul Piper, Audiology Clinical Lead. At the appointment Paul identified that Barbara’s hearing aid was not right and that she could benefit from having a Cochlea implant. Paul immediately phoned Southampton University Hospital during Barbara’s appointment to refer her and get an immediate appointment for her. Barbara feels that Paul was the first person to really listen to her and take immediate action.

Barbara was subsequently seen very quickly at Southampton University Hospital in January 2015 and after 14 assessments it was agreed that she was a viable candidate for the Cochlea implant. Barbara received the surgery in April 2015, four weeks later the implant was ‘switched on’ and it changed her life forever. Barbara feels overwhelmed with how amazing her hearing is. She still has tinnitus but because she now hears all other sounds it blocks out the noise of the tinnitus.

After ten years of not being able to hear Barbara now appreciates all sounds and particularly enjoys hearing the birds singing and listening to music.

Barbara feels that she received the best treatment from Dorset Healthcare and she felt well cared for by all members of staff from the clinicians to the receptionist.

Barbara stated that the Cochlea implant is very expensive but the difference it can make in changing someone’s life is indescribable. Barbara wants to share her story so that others can learn from her life changing journey.

Barbara has shared her experiences with Yours magazine who published her story in February 2016. She has also shared her story on Solent Radio and even had a tattoo of her Cochlea implant to mark her tribute to the west team.

My name is JW, I have been with my fantastic husband for only 10 years. I had a career for a Global IT company dealing with clients, I had money, freedom and could go where and when I liked. I also had dreams and hopes for my future.

As a carer I have given up the career and the independence it brings, the regular contact with people and friends. I rarely leave the house without either of my charges in tow or rushing around doing chores so fast so that I’m not away too long for anything nasty to happen.

We take care of my stepfather who has double Dementia’s Alzheimer’s and Vascular Dementia, heart, lung and kidney problems and my sister who has severe learning difficulties Downs Syndrome. It’s a daily challenge of finding different ways of coping.

We got suspicious when my sister finished working for ASDA after 17 years as dad needed her at home. This was in reality because he was losing his way when driving. We had the frequent responses from dad of “I don’t want or need your help”. We found him on the floor numerous times and had frequent trips to A&E. We had lots of plausible explanations with the diagnosis but no one thought to scan, test or investigate. Dad suffered another TIA/stoke and after 3 years, doctors wanted to find out why and sent him to Alderney Hospital. We were told he would be admitted for 7-10 days while they assessed his abilities and health, as they suspected dementia. Brilliant someone is listening to us. We decided to sort the bungalow out and make it safe and clean, but after 2 days Dad was to be discharged. When I tried to explain what was going on with cleaning and builders, we still had to bring him home. Please discuss with the carer the effects this may have on the family if you have to discharge early. Dad could have gone to a nursing home for a week or two while his home was made safer for him.

As a carer I know and understand exactly how my loved ones will react in certain situation. M has to have frequent blood tests but she’s terrified of needles, not the pain, not the drugs the needle. After a lengthy phone call to 111 who insisted on discussing the problem with M on the phone as they needed her permission, we had to persuade them this wasn’t possible as she wouldn’t understand. We decided to take her to A&E. The young doctor wanted to put in a cannula and take bloods. He was told about M’s phobia of needles, we talked about the best way to do the job. I cuddled her, hid her face and once calm I told him to start and we ‘sang let it go’, a nurse joined in - job done everyone happy.

Listen to the carer, dementia/learning difficulties can muddle or use the wrong words but the carer can often translate. Like M will tell you it’s tickling, then we have to find out is a nice tickle or a bad tickle. In other words, she’s in a bit of pain or a lot of pain.

My hopes for change

• Return phone calls, if you promise to get information, call or arrange something. Even if it's just to say I've not forgotten, just waiting on something.
• Respond to voicemails, or e-mail or pass the message on.
• Let us know if you're running late for a home appointment, it may have a knock on effect.
• Sometimes we do ask too many questions, which may appear insignificant, but this is because we have to understand fully so that we can explain to our charges.
• We have a wealth of experience and knowledge in dealing with relatives, talk to us.
• Saying uncaring comments in earshot, i.e. it would be easier if she lost some weight, stopped smoking or had a bath.
• Letter addressed to Dear Service User.